RAISING JOEY

Recently, the words “Retard” and “Retarded” have become political volleyballs. Disingenuous figures from across the ideological spectrum have been lining up to take their shot at smashing the R-word down our throats. And no matter what party is being “represented” or what Constitutional Right is being exercised, whose agenda is being advanced? The people who have been hurling the R-word about have failed to realize that their language is the stuff of cowards! Only spineless bullies pick on those who cannot defend themselves. And by using the R-word without an once of compassion or even the least bit of sensitivity towards those who are damaged by their hate-speak, these prominent figures have truly become national shames. And it stinks!

People with Special Needs — and their families — do not need any help to make their lives “a little more challenging.” They already have plenty on their plate, thank you very much. And the last thing that any Special Needs family wants is to be assaulted with the R-word. It is already an uphill battle!

Dignity is inherent to the human condition. An individual’s dignity is not only an entitlement. It is a fundamental quality that distinguishes each of us and lends an informed significance to everything that we do. And any time a person’s dignity is stomped on, it is wrong! The R-word robs people with Special Needs of their dignity. And it is time to stop.

What if from now on, we changed the way we use the words “retard” and “retarded?”

It hardly seems like the largest of sacrifices. Not when you consider the changes in language that we have already so willingly elected to integrate into (or expunge from) our vernacular. We no longer use the words “N*gger” or “k*ke” or “f*ggot” or “c*nt.” Why would we? Why on earth would we? Those are all words that hurt. Those are all racial and ethnic slurs and epithets that perpetuate negative stigmas. They are painful. And that is not okay. It is wrong to pain people with our language. Especially when we have already been made aware of our oral transgressions’ impact.

Make no mistake about it: words do hurt! And when we pepper our speech with “retard” and “retarded,” we are spreading hurt. So stop it. Stop saying “retard” and “retarded.” There is no acceptable occasion to lace our dialogue with words like “n*gger,” or “k*ke” or “f*ggot” or “c*nt.” There is no longer any acceptable occasion to lace our dialogue with the words “retard” and “retarded.” Without fail, those are all word that hurt. They straight up are. So, cut it out. Stop using the R-word.

The millions of people with Special Needs (around the planet), who are on the receiving end of this hate speak, are genetically designed to love unconditionally. These “retards” are NEVER going to return our vitriol. Ever! So, what could possibly be the up-side of continuing to use the R-word in our daily discourse?

Only cowards pick on those who cannot defend themselves. By using the R-word we are inadvertently, sadly and sometimes directly hurting a group of people who never did anything wrong to any of us. Not even close.

APPLETON — Sometimes, when Appleton mom CJ Field is crocheting afghans, her 5-year-old daughter Emmalee gets out her own crochet hook and ball of yarn.

Like many children her age, Emmalee, who lives with Down syndrome, tries to do what her mom does.

These days, crocheting and boxing up afghans for other families with children who live with Down syndrome takes up much of Field’s free time. Field, a nanny, creates afghans as an outgrowth of the T21 Traveling Afghan Project, an effort she began in March.

One afghan is traveling the country and overseas, visiting family after family. The families take photos with the afghan for the project’s Web site, which also displays pictures of children with their individual afghans.

“Afghans represent security and safety and warmth and comfort,” Field said late last week. “It’s essentially like sending a hug. Emmalee helps me pack up the afghans and send them off. Every time she picks out colors and I make her one, she wants to shove it in a box.”

Field started the project to further unite an online community of bloggers that gains strength in sharing similar family experiences. That project and community are inspiring her to hold an offline awareness-raiser and benefit Wednesday for an international Down syndrome orphan ministry.

The event runs from 6 to 8 p.m. at Harmony Cafe, 233 E. College Ave. A suggested donation at the door is $5.

It supports the work of Reece’s Rainbow, a Maryland-based adoption agency that finds homes for children with Down syndrome and other special needs. The event is Field’s way to rally others around the agency’s fourth annual Christmas Angel Tree Project.

“I think it’s a really good push for awareness,” said Michelle Zoromski of Combined Locks, who is adopting a 5-year-old girl with Down syndrome from Eastern Europe through the agency. “Other families would love to bring children home and they don’t have resources or support to do that.”

Andrea Roberts, the agency’s executive director, said this season volunteers such as Field are raising funds for a specific child awaiting adoption. The agency’s goal is for each volunteer to raise at least $1,000 for the child’s adoption fund.

Money from donations, a silent auction and sales of contributed afghans Wednesday will funnel into the fund for “Melissa,” an almost 4-year-old girl from Eastern Europe.

Field, whose daughter was 15 months old when she adopted her through Florida’s foster care system, said she hopes the event might bring the child who is waiting overseas one step closer to home and family.

MADISON — The Jensen family and their friends will be out in force at Hammonasset Beach State Park today, donning “Team Janie” T-shirts as they walk the boardwalk to raise money and awareness.

Jane Jensen, 8, who like many children at the event has Down syndrome, will take part and play.

The Jensens will be among more than 1,000 people expected to gather for the fifth annual Connecticut Down Syndrome Congress’ Buddy Walk, a fundraiser that includes food, music and activities. As of preregistration, $75,000 has already been raised, said Jane’s mother, Amy Jensen, who founded the event on the Shoreline. The walk helps fund the Down Syndrome Adult Assessment Program at the Hospital of Saint Raphael in New Haven, Jensen said. The program provides a one-month opportunity for patients with Down syndrome to receive a “full psycho-social medial overview,” said Dr. Gerard Kerins, who is the head of geriatrics at St. Raphael’s, and runs the program.

Jensen said the Buddy Walk is important not only for the fundraising, but because it attracts many people who do not have Down syndrome, who can learn about it.

“(Kids with Down syndrome) still dance and laugh and play and want to have a good time and I think it takes away some of that mystery that can create fear and stereotypes,” Jensen said of the day. “It’s a neat thing to feel that maybe you’ve opened somebody’s mind and heart a little bit, and I think they take that away with them, because they keep coming back.”

Pam Wilson, Jensen’s mother and Jane’s grandmother, said she has seen more families without children who have Down syndrome attend the event in recent years.

The Buddy Walk, which will also have a disc jockey, moon bounce and face painting, will help kick off national Down Syndrome Awareness Month in October. Master of ceremonies will be Sonia Baghdady, anchor for News Channel 8 WTNH.

The day also helps CDSC fund its activities throughout the year, Connecticut Down Syndrome Congress co-President Elect Jessica Heeran said. The Connecticut Down Syndrome Congress reaches out to families who have children with Down syndrome — adopting families when babies with Down syndrome are born — and provides them with resources and information, Heeran said.

Initially, a Down syndrome diagnosis can come as a shock, said Lori Murphy, a nurse who lives in Madison. Murphy’s son, Brian, 15, has Down syndrome.

“I know I was really, really sad when I had him, I was sad with the diagnosis,” Murphy said. “You have to mourn this perfect child that you’re not having, but then you realize, he is perfect, it’s just in a different way, and he’s really the light of our lives.”

Kerins said his year-old program — which receives significant funding from the Connecticut Down Syndrome Congress — is always booked, and he would like to expand it.

Jensen said she’d like to see the program expanded to include children, and hopes another sizeable donation from this year’s event will help. Wilson, of Guilford, said 1,100 people have registered for the Buddy Walk, and that people can register in person today.

Kim Mastriano-Guile, who is the CDSC’s director for New Haven County and will be among the walkers today, said relatives from as far as Florida will attend, as they come together for her son, Jake, 4, who has Down syndrome.

“Even just having Jake is a blessing for us, this kind of epitomizes it, this one day when we can all get together and celebrate him,” she said.

Walk registration begins at 11:30 a.m. today. The walk will begin at 1 p.m.

My granddaughter Lucy is six years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort.

Dr. Brian Skotko, a genetics fellow at Children’s Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman’s pregnancy, is coming, perhaps as early as next year.

“As new tests become available, will babies with Down syndrome slowly disappear?’’ Skotko ponders in a soon-to-be-published article in the Archives of Disease in Childhood, (a British medical journal) available online now.

It’s easy to understand why parents fear a diagnosis of Down syndrome. You Google definitions of it, and even now archaic words and misinformation pop up. It’s the same in doctors’ offices. Pregnant women are told only the negatives. Old stereotypes linger.

My granddaughter cannot do all the things that typical kids can. She doesn’t come home from school full of stories. They may be in her head, but we can’t see in there. She speaks and sometimes we don’t understand. She can’t make a teddy bear with paper and glue, not without help. She can’t understand why her grandfather would rather watch baseball than Shirley Temple. She does not have the same skills and abilities that her 5-year-old cousin Adam has.

But Adam doesn’t have the skills and abilities she has. He doesn’t always enter a room and greet everyone with a big smile. He doesn’t always leap to his feet and race to his father when he comes home from work. He can’t sit for hours in a fancy restaurant or through a long movie. And he doesn’t know instinctively when someone is sad and needs a hug.

He can field a ball and she can work a room. He sings a whole John Denver song, and she sits and applauds.

This is what doctors don’t tell mothers having babies with Down syndrome, that you will see in your child amazing things that you won’t see in ordinary children.

Of course, parents want healthy kids. And some get them. But children get sick. They get in accidents. They lose limbs. They suddenly stop talking one day.

Children in wheelchairs, on ventilators and crutches? Children hooked up to IVs getting chemotherapy? People on waiting lists for transplants? People with chronic diseases. Soldiers changed by war. Civilians changed by an accident.

They weren’t born this way. But if there were a test that showed their future - that showed diabetes and cancer and autism and muscular dystrophy and mental illness and depression and alcoholism - would women take it? And seeing what would be, would they choose to abort?

Last week we took Lucy to Davis’ Farmland in Sterling, where we played with the animals. Then we went to a wine tasting at Nashoba Valley, where Lucy drank juice and shared our cheese and crackers and enjoyed the day.

All kids with Down syndrome are not like this. But this is Lucy. She makes me notice the ordinariness of people who don’t have it.

In the play “Cabaret,’’ set in Berlin as the Nazis rise to power, a man loves a woman he’s not supposed to because he’s Christian and she’s Jewish. He tries to explain his love to his friends. And because “Cabaret’’ is a musical, his explanation is a song.

“If you could see her through my eyes, you wouldn’t wonder at all. If you could see her through my eyes, I guarantee you would fall, like I did. . .’’

Like I did. Like Lucy’s mother and father did. Like all the people who know Lucy and people like her did. Like the world would, too, if only given the chance.

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CONSTABLEVILLE — Genetic testing can tell pregnant women whether their baby has Down syndrome.

It doesn’t tell them what to do about it.

Basically, women have three options: keep the baby, put the baby up for adoption or abort.
Pre-natal testing can give families more time to prepare for a child with special needs or to arrange for an adoption. (There’s a six-month waiting list to adopt babies with Down syndrome.)
But most women choose abortion.

“Most recent studies suggest 80 to 90 percent of mothers with definitive diagnoses will choose to terminate,” said Dr. Brian Skotko, a resident at Children’s Hospital Boston and Boston Medical Center, who has researched how doctors deliver the Downs diagnosis and has written two books about Down syndrome.

The way doctors tell expectant mothers about the diagnosis probably contributes to the high abortion rate, Skotko said.

Skotko, who has a sister with Down syndrome, surveyed mothers of children with Down syndrome who said that their doctors offered inaccurate, incomplete and even “offensive” information.

“So the provocative question is – are mothers making an informed decision?” Skotko asked.
Skotko and Dr. Fred Hirschenfang, medical director for the JUDY Center for Down Syndrome in Hackensack, NJ, spoke on presenting and understanding a prenatal diagnosis of Down syndrome at a conference in May at the Otesaga Resort Hotel in Cooperstown. The conference was sponsored by the Kennedy-Willis Center on Down Syndrome at Pathfinder Village in Edmeston, a residential village and school for people with Down syndrome.

Down syndrome is a genetic disorder in which babies are born with an extra 21st chromosome. It generally causes mild to moderate retardation, distinctive facial features and a higher risk of a host of health problems.

The number of families facing a prenatal diagnosis of Down syndrome will probably increase in the near future.

Two reasons, first, the American College of Obstetrics and Gynecology changed its guidelines in 2007 to recommend that genetic screening be offered to all women, and recommends diagnostic testing for those found to be at high risk.

In the past, the testing was generally only offered to women ages 35 and older because diagnostic testing – amniocentesis and chorionic villus sampling – carry a slight risk of miscarriage and older women face a higher risk of having a baby with Down syndrome.

And researchers are testing a new, risk-free blood test that, according to preliminary results, can diagnose Down syndrome during the first trimester without the risk of miscarriage, presumably convincing more women to undergo testing and allowing for earlier abortions.

No one knows if the test, which could become available over the next several years, would actually lead to more abortions, but Edward Shafer, Pathfinder’s CEO, is worried.

“Over time, we (could) lose a whole element of human diversity,” he said.

For now, advocates say, doctors need to get better at breaking the news to parents.

Rosanne Pesola, director of the Kennedy-Willis Center, recounted the story of a pregnant woman who recently received a prenatal diagnosis of Down syndrome and called the center for information. She said her doctor had, after delivering the diagnosis, asked her when she wanted to schedule an abortion, said.

“And this happens all the time,” Pesola said. “It’s the lack of sensitivity of the message coming across.”

“Let’s be factual, let’s be gentle and let’s be sensitive when we deliver this message to people,” Pesola added.

Nearly five years since Lindsey passed away from leukemia, just before her 20th birthday, Hanebury continues to serve the organization her daughter gained so much from for most of her short life.

Lindsey was born with Down syndrome in 1984. Her grandfather, Hanebury’s dad, had grown up with a horse and encouraged the family to check into hippotherapy as a way to help improve Lindsey’s low muscle tone.

Sebastian Riding Associates, a nonprofit organization operating from Evansburg State Park in Collegeville that specializes in therapeutic horseback riding, provides equine therapy to children and adults with a variety of physical, mental and emotional disabilities.

At age 2 Lindsey began hippotherapy, which Hanebury explained “doesn’t actually teach riding skills.

“It’s a therapy session,” she said. “The therapist is manipulating the student all while the horse is moving, to work on balance, core strength.

“This was great for her, because she loved the horses … so she was receiving the benefit of the therapy, and she didn’t even know she was having therapy because it was enjoyable for her.”

Hanebury, who grew up in Jenkintown and lives in North Wales with her husband, Steve, and their two grown children, knew from the start that Sebastian was a place where a child born with limitations could feel confident, unstoppable.

She attended functions over the years and donated items for fundraisers. But it wasn’t until Lindsey was about 15 and horse crazy when Hanebury became more “present” at Sebastian.

Lindsey had transitioned from a hippotherapy student to a therapeutic riding student with an instructor to teach her riding skills. Hanebury supported her daughter’s passion, volunteering more and more, helping out with shows Sebastian’s 4-H Club put on.

In April, the San Diego-based company had delayed launch of the test, citing mishandling of research and development test data and results by an employee.

Sequenom said the company intends to cooperate completely with the regulator’s investigation and the company’s internal investigation was ongoing.

Shares of Sequenom were down 8 percent at $3.60 after the bell. They closed at $3.91 Tuesday on Nasdaq.

Six years ago, I didn’t feel blessed. Lucy, my first grandchild, my daughter’s child, was 12 hours old when we learned she had Down syndrome. We wept. Three days later, we were told she had holes in her heart and would need surgery. We took her home and fed her and held her and rocked her and sang to her. And we prayed.

Fear consumed us then. We worried about her health. Were her lips blue? Was she sweating from exertion or was the room too warm? We worried about her future. Would she walk? Would she talk? We worried about our future. Would the stress of all this worry pull our family apart?

Heart surgery. And we almost lost her. Then more heart surgery and, again, a crisis. Blessed? The word never crossed my mind.

Then slowly things got better.

If only life were like a book and you could peek ahead. Lucy will be 6 on Saturday. If only, when she was new and we were scared, we could have had a glimpse of Lucy now.

When she was little, 2, 3, maybe even 4, she used to practice talking in her crib. Away from everyone, she would chatter, naming things, her stuffed animals, the toys in her room, the people in her books and in her life. Over and over, she’d say Mommy, Daddy, Adam, Mimi, cow, duck, cat, and every other word she knew.

She was quieter in front of people, shy until she got a word right.

It took time, but she got them right. This is Lucy. Give her time and she’ll amaze you.

These are things about her now that I never could have imagined then: that her favorite movie would be “Gone With the Wind.” That she would know all the characters, except for Sue Ellen. (”Who’s that?” she asks every time Scarlet’s sister comes on the screen. Poor Sue Ellen - forgettable even to a child.)

That she would always race to the door to greet her mom and dad, dropping whatever it is she is doing to hug them, to tell them with her smile and her open arms - even if they’ve been gone just 10 minutes - how glad she is to see them.

That she would love the “peace be with you” moment in church. That she would say “peace,” reach for hand after hand, look into a stranger’s eyes and smile. And that even the most reluctant hand-shaker would smile back.

And that she would love our neighbor Al, and seek him out in his yard, in his house, in my house. “Al! Al!” Katherine, his wife, the one who makes her favorite cookies, but Al the one who has her heart.

It’s not all roses of course, with Lucy. She doesn’t understand that the street is dangerous and that you can’t sit down when you’re an outfielder and that the DVD player sometimes sticks and whining doesn’t unstick it.

In these ways she is a lot like a typical 6-year-old.

But she is not typical.

It takes her longer to learn and longer to understand. But when she does? It’s like the circus has come to town. She says a whole sentence “I want to have a banana, please.” She puts together a puzzle. She matches colors and shapes. She climbs to the top of the slide, sits, and glides down. She stands at the window and reenacts a scene from “The Little Princess.” The Wallendas doing headstands on a tightrope couldn’t thrill us more.

Sometimes when I watch children her age do things effortlessly, my heart aches a little. But then Lucy will saunter by, climb on my lap, or say hi and keep on walking, and I will be bowled over by her presence, by the amazing gift of her.

How blessed I am. How lucky to be loving her. And how easy she is to love.

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ROCKFORD — Haley Nunez is funny, spirited, independent and popular. Just ask the 19-year-old recent East High School graduate. She’ll tell you. But she says it in a way that’s genuine. She’s not bragging.

She loves the Jonas Brothers and talking about boys; typical teenage chatter. But she has had a different life from other graduates.

Haley has Down syndrome, a common genetic disorder where a child is born with 47 rather than 46 chromosomes, resulting in developmental delays, mental retardation, low muscle tone and other possible effects.

Ed and Debbie Nunez were thrilled to have Haley, but their emotions flipped when they learned she had Down syndrome. “We went from the cliff to the valley,” Ed said.

Raising Haley was just like raising any other child. The new parents took Haley everywhere and exposed her to all aspects of life, not sheltering her or holding her back from judging eyes.

“We kind of just flew by the seat of our pants,” Debbie said.

When it came time to attend school, Haley tried private school, then transferred to the Rockford School District. Some teachers thrived with Haley, and she had her own aide in the regular classroom. In middle school, Haley was too high-functioning for a special-education room, but needed more help than regular classes could offer. She muddled through, but high school was a turning point. Her parents chose East High School based on several recommendations from other parents.

An upstairs room of their Hebron home has been turned into a puppy-themed nursery, its shelves filled with baby books and stuffed animals.

Elizabeth Miller, who is six months pregnant, and her husband, Scott, already know their child’s name, which they’ve spelled out in large letters on the wall nearest the crib: Elijah.

The first-time parents also know this: Elijah has Down syndrome.

“I think the most common reaction from people is, ‘Oh, I’m sorry,’ ” said Scott Miller, 29, a customer service manager for a gearbox manufacturer. “We don’t want people to be sorry, because we’re going to finally have our baby.”

“For me, the (diagnosis of) Down syndrome was more of a relief,” said Elizabeth Miller, 28, a preschool teacher who previously suffered two miscarriages. “This baby’s going to live. We’re going to be OK.”

The Millers are preparing to welcome Elijah into the world just as the Down syndrome community locally and nationally reaches a pivotal point.

Each year about 5,000 children in the U.S. are born with Down syndrome, which is caused by an extra chromosome.

But some advocates worry that new prenatal diagnostic tests could increase the likelihood that expectant parents will abort such pregnancies. And a dwindling population might mean fewer resources and services.

“The most recent studies suggest that between 80 percent and 90 percent of (U.S.) mothers who receive a definitive diagnosis of Down syndrome prenatally will choose to terminate the pregnancy,” says Dr. Brian Skotko, a physician at Children’s Hospital Boston who serves on the National Down Syndrome Society board.

Those rates likely are not as high in more conservative regions such as the South and Midwest, including Cincinnati, experts say.

Underpinning those numbers are two studies by Skotko, released in 2005, that found obstetricians and genetic counselors often provide inaccurate, incomplete and sometimes offensive information when delivering a prenatal diagnosis of Down syndrome to expectant parents. Mothers who were surveyed reported that doctors often didn’t tell them about the positive potential of people with Down.

“We’re not saying to paint a rosy picture, but we’re saying you have to give both sides of the story,” said Janet Gora, executive director of the Down Syndrome Association of Greater Cincinnati. Children born with Down syndrome are at high risk for a number of medical problems, including congenital heart defects, as well as developmental delays and learning disabilities.

But people with Down can lead full, productive lives. Many graduate from high school; some go on to college.

Technological advancements have afforded many benefits to the pro-life cause. Ultrasound imaging has revealed the child in the womb as a living, feeling human being, and at earlier stages than previously thought possible. The widespread use of such technology helps explain significant shifts towards the pro-life position — both in sentiment and in deed, especially among young Americans — over the last fifteen years.

But medical technology has had some negative effects, too, especially for unborn babies with disabilities. Ultrasound imaging is routinely employed to discern genetic abnormalities in unborn children and to end the lives of those who fail to meet the standards of a culture that increasingly views genetic perfection as an entitlement.

This month, Sequenom, a company that makes genetic analysis products, was set to release a new genetic test for Down syndrome. The test, called SEQureDX, has been hailed by some as “the Holy Grail of genetic testing,” because it is safer and more accurate than any previous prenatal genetic test. But once it hits the market, SEQureDX may become known for something far less inspiring: as a leading tool for the elimination of an entire class of people.

Currently, prenatal genetic testing involves a combination of blood tests and ultrasounds to determine whether an unborn child faces significant risk of having a disability. Some women undergo further testing to confirm or rule out a diagnosis. The most common test in amniocentesis, in which amniotic fluid is extracted from the amniotic sac surrounding the baby. Fetal DNA in the tissue contained in the fluid is then examined for genetic abnormalities.

But many women eschew amniocentesis. Not only must amniocentesis wait until the second trimester of pregnancy, but it also carries a significant risk of miscarriage (as high as 2 percent) and risks causing fetal abnormalities, pre-term birth and fetal trauma.

The new tests, including SEQureDX, are less invasive, more accurate and can detect a broader range of fetal conditions with more sophisticated blood tests that examine a baby’s genetic information in DNA that circulate in the mother’s bloodstream.

The famed Boston scientist Judah Folkman puzzled over the question for decades, since encountering it on an exam as a young medical student.

Now, 17 months after he died, researchers in his lab at Children’s Hospital Boston have found an answer, and their discovery could provide a beacon to scientists developing treatments and preventive medications designed to be broadly effective against cancer, wherever it resides in the body.

The scientists discovered that the extra chromosome carried by people with Down syndrome - which causes the condition’s distinctive features - harbors a gene responsible for starving tumors of the blood they need to survive and flourish.

That had been Folkman’s suspicion all along.

“Most people don’t appreciate the fact that these individuals with Downs potentially hold a secret that might lead to quite substantial and revolutionary new treatments for cancer,” said Dr. David Sweetser, who treats patients and researches cancer at MassGeneral Hospital for Children but was not involved in the Downs project. “The obvious hope is that this is going to give us information to help develop a tool that we could use to treat a whole variety of solid tumors.”

In many respects, the discovery, detailed last month in the journal Nature, is a textbook example of scientific serendipity.

As a junior researcher, Sandra Ryeom wanted to better understand a protein called calcineurin - and, more specifically, what controls its activity in humans. It was a subject of intense interest because the protein plays a sometimes lethal role in causing transplanted organs to be rejected by recipients.

Six years ago, Ryeom and other scientists identified the genetic mechanism that acts like an on-and-off switch for calcineurin.

“At that point,” Ryeom said, “it was not looked at in terms of cancer, blood vessel growth, or Down syndrome.”

That changed soon enough when Ryeom recognized where that gene lives in the human body: on chromosome 21. That is the same chromosome that exists in triplicate in people with Down syndrome. Most people inherit chromosomes in pairs. But it is the third chromosome 21 that produces the external physical features and internal medical problems associated with Down syndrome, including heart defects, respiratory problems, and Alzheimer’s disease.

At the same time, experiments were showing that the gene had a significant effect in stanching the growth of blood vessels that nourish tumors.

It was like watching the pieces of a puzzle assemble: Could this gene, found on the same chromosome that defines Down syndrome, be especially bountiful in people with Down and, thus, responsible for depriving tumors of what they need to grow?

Epidemiologic studies of thousands of people with Down syndrome - there are more than 400,000 in the United States - have shown they are less than 10 percent as likely to die from solid tumors as their comparably aged peers, and that has remained true even as scientific advances allow people with the syndrome to live deeper into adulthood. Curiously, though, Down syndrome appears to increase prospects of being diagnosed with leukemia, a blood-borne cancer.

She also has Down syndrome.

I wish that statement didn’t terrify most people.

But I live in a world where 90 percent of babies with DS - also known as trisomy 21 - are aborted, and it’s perfectly fine to admit you “don’t want to raise a genetically compromised child.”

I read this courtesy of author Ayelet Waldman, who made headlines in 2005 when she penned a New York Times [NYT] piece admitting she loved her husband, author Michael Chabon, more than her four children.

Waldman has been making the media rounds promoting her new book, “Bad Mother: A Chronicle of Maternal Crimes, Minor Calamities, and Occasional Moments of Grace” (Doubleday, $24.95). This time, abortion is on the agenda.

“I did calculations in my mind of what I could tolerate - physical malformations, fine. Who cares? I measure five feet - I bet there are parents in the world who’d be horrified at the prospect of having a child doomed never to grow taller than that. But developmental delay. That shook me to my core. Mental retardation. I couldn’t go there.”

Waldman’s baby had a “trisomy,” though she doesn’t specify which type of genetic abnormality. She had a second-trimester abortion.

“I have no regrets,” she wrote in a 2005 piece on the subject for Slate.com.

So there you have it. Another well-meaning, well-educated woman telling the world - in Time magazine, on NPR and in the papers and on the Web - she couldn’t do it. Couldn’t possibly disrupt the family, burden the kids, risk their marriage.

That’s her truth.

As someone who is raising “a genetically compromised child,” here’s mine:

T-ball with the “typical” kids sends me home with cravings for martinis. I’d prefer playdates over after-school speech and occupational therapies. And I have the shameful, unnatural thought about whether it would be better if I outlived my own daughter.

So, it’s not easy.

But then Lucy, all 37 pounds of love, charm and obstinacy, will do something magical, like hit the ball off the tee and run to first base, or recite all the words to “Where the Wild Things Are,” or unpack her backpack all by herself. Or say “Mommy, I want more Cheerios, please.”

And I’m reminded of what every parent of any type of kid knows: Nothing worth having is easy. And Lucy’s is a life worth living.

I was at Carney Hospital the other day when a nurse, Dottie, told me her brother has Down syndrome. He’s 45 and lives with her and her family.

“You are so blessed,” she called to me as we left.

Flash forward to high school. Alex’s family had moved to the Napoleon school district, and the friends lost contact until his photo appeared with a Citizen Patriot story about him serving as manager of the boys basketball team.

Alexis’ mother saw it and suggested her daughter give him a call and invite him to prom.

Today they celebrate their first wedding anniversary. It is a love story made even more so because the couple have Down syndrome.

“I can’t even put into words how wonderful that feels, that Alexis found someone to love and be happy with. It’s what every parent wants for their child, and it’s wonderful,” said Laura Smith of Clark Lake, Alexis’ mother.

On April 26, 2008, Alex DeNato, 27, and Alexis Smith, 25, were married in Queen of the Miraculous Medal Catholic Church, vowing to love one another as husband and wife.

They have a two-bedroom apartment in Alpine Lake Apartments, chosen because it is on the Jackson Transit System line and they use its Reserve-A-Ride service to get to work.

Alex washes dishes and peels potatoes at the Napoleon Café, and Alexis bags groceries at Polly’s Country Market in Brooklyn. They walk to Citizens Bank on Fourth Street and often walk to visit his parents, Mark and Chris DeNato, in Summit Township.

Alexis handles their money and checkbook, and Mark DeNato tracks it online, but rarely does Alexis make a mistake.

Laura Smith drives them to Polly’s Country Market at Ferguson Corners one weeknight each week.

Patrick made sure his opportunity counted, scoring a 3-pointer with just his second shot. Then, with one minute left in the game, fans stood and chanted Patrick’s name. The coach put him back in the game and he delivered — sinking another three-pointer at the buzzer. Patrick’s teammates swarmed around him, and carried him off the court.

The night was extra special for the Thibideau family. Just two weeks ago, Patrick’s father Perry, an assistant coach for the team, suffered a stroke. He almost didn’t make the game, but when Perry’s doctors heard the situation, they let him out of the hospital just in time to see his son play. Perry said seeing his son score was thrilling.

“It was kind of surprising to me, I couldn’t see who had the ball cause I was sitting way down here,” says Perry. “But when I saw the ball go up and every one stand up, I said, yeah, I knew that was Patrick. Especially when it went in, that was fantastic! Best feeling you could ever have in your life… become a parent and you find out why.”

Patrick’s performance was thrilling to the whole Greely High School boys’ team. Sam Thompson offered up his starting spot to let Patrick play.

“He comes to practice every day. He comes to every game. He works really hard. He just deserves it,” said Thompson.

In a group of 459 pregnancies, Sequenom (nasdaq: SQNM - news - people ) said it correctly diagnosed 96.6 percent of the cases of Down syndrome and other genetic disorders, and correctly identified 100 percent of the negative results. Sequenom initially said 100 percent of the positive results and 99.9 percent of negative results were correct.

The company also revised the number of cases that were initially “unresolved,” to 94 from 106.

The stock lost $1.46, or 7.2 percent, to close at $18.90.

Lazard Capital Markets analyst Sean Lavin said the errors were apparent last week. He said he is still confident in the market for the test, which analysts say could become favored over amniocentesis because it appears to be more accurate, as well as less invasive and expensive.

“We are pleased to see the company correct these numbers, but still feel the errors should have been caught before last week’s presentation,” Lavin said in a note to clients. “They do not change the data at all and will make no difference in adoption, but hurt credibility, as shown by the share price.”

Mary Carmichael
NEWSWEEK
From the magazine issue dated Dec 15, 2008
Beth Allard was recovering from labor, waiting for a hospital photographer to capture her newborn son’s first day in the world, when a pediatrician walked into her room and told Allard her life was ruined. Allard might have expected as much from a doctor, given what she’d already heard from others in the previous few months: little Ben, who had tested positive in utero for Down syndrome, would be mute and illiterate, they said; he would spend his life hanging off her, drooling. The pediatrician was harsher: “You should consider putting him up for adoption,” she said. “You’re going to end up divorced. Don’t even bother having any other children. Didn’t you have the option to terminate?” Finally, the pediatrician left, and Allard resumed her wait for the photographer. He never came.

Ben Allard is now 9, and it’s hard to understand why doctors were convinced he would be such a burden. He’s a friendly, witty kid who’s happily enrolled in third grade at a regular school. He does, says Beth, “all the things they told us he wouldn’t be doing, and more.” She shudders when she thinks about how wrong the doctors turned out to be: she almost took their advice and ended her pregnancy.

She would not have been alone in that decision. Life with Down syndrome can be very challenging for both parents and kids, and according to studies, 90 percent of women whose fetuses test positive choose to abort. Now, because of a technological advance, pro-life and disability advocates worry those numbers may rise even higher. Currently, Down syndrome is picked up with blood screens and ultrasounds, then confirmed with invasive tests such as amniocentesis and chorionic villus sampling, which insert needles into the uterus and slightly increase the risk of miscarriage. Some women forgo the tests for that reason. Next year, though, new, noninvasive genetic screens that pose no harm to fetuses or mothers may start arriving in doctors’ offices. If they become common, they could result in more diagnoses, more abortions, a dwindling Down population and a drop in support for families who carry to term—what Down activist Patricia Bauer has called “the elimination of an entire class of people.” Even now, only 5,000 babies are born with the syndrome each year.

As technology has advanced, doctors’ education about Down syndrome has lagged behind. Allard’s tactless pediatrician gave her an outdated book that used the pejorative term “mongoloid.” Many doctors seem unaware that early intervention with speech and occupational therapy, combined with medications or corrective heart surgery, has allowed some children to grow up relatively normally, graduating from high school and holding jobs. In a large 2005 survey, mothers of children with Down syndrome said they had received little or no information about the positive side of the condition. (Families often end up stronger. A 2003 study in the American Journal on Mental Retardation found that healthy siblings are highly empathetic; another study in the same journal this year showed that parents are less likely to divorce.) Doctors were also in the dark. “Even among obstetrics fellows, 45 percent said their training in how to deliver a diagnosis was barely adequate or nonexistent,” says Dr. Brian Skotko, a pediatrics resident at Children’s Hospital Boston who has studied how doctors tell patients about sensitive diagnoses. In a 2000 study published in Prenatal Testing and Disability Rights, 23 percent of doctors admitted trying to influence mothers’ decisions, usually encouraging them to abort.

Until this fall, a bill based on Skotko’s research—one calling for doctors to provide “accurate and up-to-date information” about Down syndrome to expectant parents—had been stalled in Congress. The new noninvasive tests “put it on the front burner and turned up the degrees,” says Skotko. (So did Sarah Palin’s rise; Sen. John McCain became a cosponsor shortly after naming Palin, who had a baby with Down syndrome in April, as his running mate.) The bill passed easily in September. “It was a rare political moment,” says Skotko. “The pro-life people believed that women making informed decisions might be more apt to continue their pregnancies. And people who were pro-choice saw the bill as pro-information but not telling doctors what to do.” There’s no funding for the new law yet, but disability advocates hope it will go into effect around the same time the new genetic tests do.

The Allards are among those supporters. They testified on the bill’s behalf, hoping to show lawmakers the kind of life they believed their doctors hadn’t told them about. They have a strong marriage, a healthy second son and a great sense of relief that they have their first one. Ben has something good, too—a new pediatrician.

John C. McGinley (JCM): I love doing Scrubs because it keeps me close to Max. When you go do a film, you’ve got to pick everything up and go wherever you’re going to shoot—Buenos Aires, the Philippines—for four months. And the chances are, when you do go and relocate, that unfortunately whatever you’re shooting just isn’t going to be that great. Just because of the number of quality movies that you and I want to see… there’s not that many. And so when you get on a winner, you want to stay on it. And Scrubs is just something you can tell people you’re on and be proud of it. Or I can. And it’s in LA and with the new baby and with Max coming into puberty—which is a whole other thing—I want to be around. And Scrubs has facilitated that.

EP: So it allows for a lot of time to be home?

JCM: Absolutely. Look, when we’re shooting, we work five days a week, and we shoot 14 hours a day. So when Max gets there I’m tired, but who cares? We’re going outdoors, we’re playing baseball, we’re playing golf, we’re getting in the ocean, we’re running the dogs. I’m kind of the camp counselor dad.

EP: What is Max like? What are his hobbies, and what do you do together?

JCM: Max loves pinball. It started out as a way to address some of the fine motor skills challenges we were dealing with. The reason that pinball addressed the fine motor is because I make him pay. So you have to put 50 cents in, and to put 50 cents in, I wanted him to have two quarters in one hand and take it and put it in. Also, tracking that ball down to where it’s going to go and triangulating that ball with the flippers has been fantastic. So we have a big, old pinball machine. And I tested out as many as the guy had, and I found the one with the most spoken language, because Max does well with repetition. So we play a lot of pinball. Also, Max loves dogs. He has three dogs and one at his mom’s house so he has four dogs. We play with the dogs nonstop down at the beach. And during the writer’s strike, last October until March, I built a baseball field. So we play a lot of baseball, go to the driving range, and he loves bowling; he likes the chaos, noise, and all the visual stimulation at bowling alleys. And he likes that Wii… loves that Wii.

EP: What was your first reaction when you learned that your son had Down syndrome?

JCM: My first reaction was that I wanted to know what I did wrong. Why I deserved this. It had nothing to do with the child. It was all completely caught up in what I had done. And I just kind of beat myself up for a while. And because Max had microscopic holes in his heart and wasn’t introducing enough oxygen into the blood as it came to his lungs and heart, we had to stay in the neonatal intensive care unit for three weeks. But as a result of going to the NICU every morning you see this kid who doesn’t really care about you and your issues—the kid needs help. And so that came around; it takes the focus off of one’s self and onto this miracle. And so that’s what I did. But you start to transfer to the kid all your light and all your energy and the kid comes home and then before you know it you’re injecting your kid with needles and then he has sleep apnea. So it was challenging. It always struck me that parents of kids with special needs—now I can see this but I couldn’t at the time—that you’re thrust into a situation where you have an opportunity to be a great parent. Because you’re going to have to be. There’s that great lyric in the Paul Simon song that goes “breakdowns come and breakdowns go so what are you going to do about it, that’s what I’d like to know.” And it’s a declaration of do. You’re going to have to do something here. Because the kid, on a lot of different levels, is not going to be able to. So what are you going to do? What are you going to bring? And it better be a lot. And so that’s what it felt like with Max.

EP: What has raising him brought to your career and the characters that you play?

JCM: In every script I have, the first thing I do is get a black and white composition notebook, and about ten pages in, I write out all the text in my own handwriting. It’s the quickest way I can memorize things and it’s also my favorite way to take the words away from the screenwriter or the playwright and make them my own. And on the first page are declarations about the things that I want the character or me to DO in this finite period of time that we have to shoot. For Cox over the last eight years, which was about three years into Max being born, the declarations of “do’s” that I wanted Cox to be able to execute, or find room for in every script, were to: a) show up, b) speak his piece, c) give compassion, d) give love, and finally get out. And the “give love,” for Cox, seemed like a little bit of a contradiction since he is kind of a jackhammer with some of these kids. But in every episode, whether it’s a beat or a huge passage, there’s somewhere where John McGinley—through Cox—is channeling love towards these kids. Does it manifest itself in me mollycoddling them? No, not all the time. But Cox is channeling love through me and Max. And that’s how Max has affected what I do. And I can’t imagine it not being that in the margins of every composition book that I transfer now.

EP: As someone with years of experience and great success in the entertainment industry, how do you feel about the portrayal of individuals with disabilities in television and film?

JCM: Well, I have a pretty strong feeling about that. Mostly as it pertains to kids with Down syndrome because kids with Down syndrome have the physical markers of a person with challenges. I mean, you see some kids with autism, and you wouldn’t know until you saw either their behavior – or something. Well, kids with Down syndrome have markers and so when you see cowards like the “Ben Stillers of the world” producing profoundly mediocre films like Tropic Thunder and dropping the word “retard” 17 times in five minutes… well, I’ll tell you something, when I see Ben, that just makes me want to pick on HIM now. Because there’s no militant arm of the National Down Syndrome Society (NDSS) that’s going to respond to a transgression—like there is in the Jewish community with the Anti Defamation League. Or, God forbid, you go and say something against African Americans; you’re going to have the NAACP in your kitchen. We don’t have the militant arm at NDSS. We have kids who when THEY go to a protest, it looks funny because they ARE so nice, and you know damn well they would rather have a hug than hold a placard. So it really cuts me to the core. And it feels to me like the perfect storm of cowardice when you pick on people who can’t return serve. So for Ben Stiller—who directed Tropic Thunder—he is just such a punk coward.

EP: So Ben Stiller is not a friend of yours?

JCM: He couldn’t possibly be a friend of mine. Because he worked with the Farrelly brothers—doing Something About Mary—and the Farrelly brothers have championed a lot of special needs causes. So there is no way that you’re not—if you’re Ben stiller—aware that you’re perpetuating a negative stigma and that you’re doing something hurtful. And so while I don’t want to be another actor who’s going to tell somebody how to talk and what’s politically correct and what’s not, if you are aware that you’re hurting either caregivers or the people with Down syndrome, what’s the upside? I don’t like any exclusionary language. I hate it. Because all it does it perpetuate negative stigmas about different groups. And where’s the upside? The upside, I assume, is when people use language like that is that someone is trying to elevate themselves by denigrating whoever the subject is. And it doesn’t work that way. It just makes you a jackass. And I loathe it. I hate bullies and that, to me, is like bully language. I loathe it.

EP: What are your goals for Max’s future, as he transitions into his teenage years and adulthood?

JCM: Well, that seems to be the big question because, while kids with Down syndrome are young and cuddly and cute as a button, they skate along a little bit. And then the big question is: What happens with post secondary education? What do you do? Where are they going to go? Where are they going to be? We’re demolishing the house right now and part of the rebuild will be an adult suite for Max so that as he gets older, he’s not going to be in a little boy room; he’s going to be in a room that can accommodate anything he wants to do. A big room that if he wants to, hypothetically, paint over there then we’ll turn it into a painting room, if he wants to compose music over there, we’ll make that a music area. Or if he doesn’t want to do any of that—fine. But I guess tangibly right now, one thing we’re doing is trying to stay ahead of the physical space curve that will accommodate whatever Max wants to do. But I don’t know what Max is going to do 10 years from now.

EP: What advice would you give to new parents who learn that their child has Down syndrome?

JCM: Number one: you didn’t do anything wrong. First and foremost this is not reciprocity for any transgressions that you may have done when you were younger. You didn’t do anything. The kid has an extra 21st chromosome. That’s it. That’s number one. Number two: breathe. Get some air, because it’s going to be a while. Number three: start discovering stores of patience that you didn’t know existed within yourself. Because some things—reading, writing, walking, holding your hand, having a catch—are going to take a little longer. So if you can find a container with patience and sprinkle it generously over your Wheaties in the morning, do it.

EP: What is it you want people to know about people with Down syndrome?

JCM: Give kids with Down syndrome a fair shake—that’s all. That’d be great, for starters. And I would like people to stop referring to kids with disabilities as “retards”—it’s like a spear in our sternum because it so diminishes that kid’s capacity to do anything because he’s a “retard” – what is that? So that kid with Down syndrome is in the corner staring at the wall. Well guess what? Maybe that kid is doing his best—leave him alone. Or go give him a hug! How about that?

EP: You have mentioned that you were a jock in high school. Is Max involved in any sports and/or do you see him taking part in athletics in the future?

JCM: Well Max learned how to play baseball, and the rules of it, on the Wii game, which is fascinating. As a result, we’ve gone to a bunch of baseball games. He loves baseball. Right now he plays soccer more than baseball. He’s in a league where every kid has an assistant so they’re not spirally off onto other things. He does it on Saturday mornings in the fall and it’s fantastic. It’s hard to get him to surf because the water is too cold in California and I didn’t have enough money when Max was born to buy a pool so we got a hot tub. So Max’s perception of water is warm-to-hot. Not cold. And so when Max gets around cold water, the look and the question is: “Are you kidding? I’m not going in that. There’s a mistake – because I’m not going in that. You can turn the thermometer up and then I’ll go in.” Because he’ll go in the Atlantic in the middle of the summer – when it’s like bath water - but the Pacific is not Max’s friend, which is fine. He runs the dogs and it’s fine - he doesn’t really care about the ocean anyway. He cares about sending the dogs into the ocean. But he’s a very good swimmer. Also, Max is fast – really fast – chasing the dogs. It would be fascinating if he could ever channel that onto a track.

EP: Would you ever be open to him competing in the Special Olympics?

JCM: I dream about him participating in some track event. But I don’t want to set him up for failure or set him up to disappoint his father because his father had one aspiration in mind and Max had a distinctly other. So those are the kind of things where I don’t want to rely on serendipity, but I would like to support a serendipitous arrival at the Special Olympics.

EP: So he is very active in all different kids of sports and activities?

JCM: Max is instructed every minute of every day, so I try to introduce enormous amounts of play into his time. I mean - I want us playing. I want us going to bed at 7:30 freaking exhausted because we were on the beach playing with the dogs, because we were down playing baseball, on the trampoline, at the batting cages. Because we were playing soccer, pinball - I want him exhausted. Then I want do it all over again tomorrow morning.

EP: How did your involvement with The National Down Syndrome Society come about?

JCM: A bunch of groups contacted me after Max was born and we were just kind of circling the wagons trying to figure out what just happened. And then dealing with the different curve balls that Max was chasing, from sleep apnea to spasms – it always seemed like they were endless. And when his health kind of stabilized – from our perception of stabilized – at about two or three years in, I thought that what the NDSS was doing was pretty good and I liked the Buddy Walk. A lot of different groups are – I found – affiliated with different religions and stuff and I wanted to just be affiliated with the kids. I respect and love organized religions but I didn’t want to be exclusionary. So I didn’t want to just work with Roman Catholic kids with Down syndrome or just work with Buddhist kids with Down syndrome – I wanted to get the families. And so when I spoke to them and I liked this day, where I could really focus on this Buddy Walk and go to as many as I could – with the schedule and with Scrubs having some success – it felt like that’s where I could contribute and be an advocate who could gain access to the media. And I thought that would be helpful.

“Trig Palin’s moment in the national spotlight is a milestone of the civil rights movement for those with Down syndrome. But it comes at a paradoxical time. Unlike the legal protections accorded the rights of minorities and women, civil rights for people with Down syndrome have rapidly eroded over the past few decades. Of the pre-natally diagnosed cases of Down syndrome, about 90 percent are eliminated by abortion. Last year the American College of Obstetricians and Gynecologists recommended universal, early testing for Down syndrome — which has only been recommended for older pregnant women. Some expect this increased screening to reduce the number of Down syndrome births to something far lower than the 5,500 annually we see today, perhaps to fewer than 1,000″ – Michael Gerson, Op-Ed in Washington Post, Sept. 10, 2008. The painful irony we parents of children with Down syndrome have been enduring for decades is this: If our children make it to birth, they are offered panoply of therapies, benefits, and Special Education. IF they make it to birth. And there’s an increasingly slim chance they will in America.

The abortion rate of children with Down syndrome is even higher in France, land of both Charles De Gaulle who had a beloved daughter with Down, and Dr Jerome Lejeune who discovered its cause in 1959 and spent the rest of his life seeking a cure.

The measure, now passed, provides that families receiving a prenatal or postnatal diagnosis of Down syndrome or other conditions will be offered accurate and up-to-date information about the nature of the condition and also connected with support services. In addition, a registry of parents willing to adopt children with disabilities will be compiled and maintained.

Down syndrome is a genetic condition that knows no boundaries and appears within all nationalities, socio-economic classes, ethnic groups and races. Most people with Down syndrome have an extra chromosome present in all or some of their cells that alters the course of development for more than six thousand babies born each year in the United States. More than 5,000 individuals across the state of Massachusetts have Down syndrome.

Local Physician’s Research Motivated Establishment of Kennedy-Brownback Bill

Dr. Brian Skotko of Children’s Hospital Boston played an instrumental role in the development of the Kennedy-Brownback bill, having completed research three years ago which clearly, and alarmingly, outlined that obstetricians and genetic counselors provided too little information when delivering a prenatal diagnosis of Down syndrome to pregnant women. Mothers who have children with Down syndrome, diagnosed prenatally, reported that doctors did not tell them about the positive potential of people with Down syndrome nor did they feel like they received enough up-to-date information or contact information for parent support groups.

Further, the mothers reported that these shortcomings occurred at an emotional time when women are deciding whether or not to continue their pregnancies. Skotko’s study remains the largest and most comprehensive study on prenatally diagnosed Down syndrome, to date, and is available at http://www.brianskotko.com. Skotko, who also sits on the Massachusetts Down Syndrome Congress (MDSC) Board of Directors, has a sister with Down syndrome and also co-authored the award-winning book, Common Threads: Celebrating Life with Down Syndrome (Band of Angels Press). After learning the news about the passing of the Kennedy-Brownback bill, which he has actively championed for several years, Skotko said, “Research has shown that physicians often provide an inaccurate, incomplete, and sometimes offensive picture about Down syndrome when first presenting the news to parents. This legislation sets out to change that, and I am pleased by the prospect that new and expectant parents will begin to receive up-to-date information about Down syndrome so that they can make more informed decisions.”

Through its statewide ‘Parents’ First Call’ program, the MDSC connects educated parents of children with Down syndrome with parents of babies newly diagnosed with Down syndrome while in utero or at birth. Parent volunteers make themselves and their experience available, while welcoming new parents into a community with similar experience. New parents receive a care package complete with updated information on Down syndrome, a photo calendar, complimentary one-year membership to the MDSC, connections to local support groups, and two books Babies With Down Syndrome and the award-winning book, Common Threads: Celebrating Life with Down Syndrome (Band of Angels Press).

“The passing of the bill is an historic moment for the Down syndrome community at large,” said Charles Gadbois, president of the MDSC and father to a daughter with Down syndrome. “The future for physicians and expectant couples is bright as now, armed with accurate and updated information, highly personal decisions will also become more informed ones.”

To gain an accurate view of Down syndrome, the Massachusetts Down Syndrome Congress (MDSC) encourages interested media and community members to join us on Sunday, October 12th at Noon at Lake Quannapowitt in Wakefield, Mass. for the annual Buddy Walk-a time when families, friends and the community at large celebrate Down syndrome and self-advocates who have risen to life’s challenges and beaten the odds.

About MDSC
Established in 1983, the Massachusetts Down Syndrome Congress (MDSC) is a non-profit organization dedicated to education about and awareness of Down syndrome. MDSC was founded to provide information, resources and support for families, while advocating for the inclusion of individuals with Down syndrome into all aspects of the community. Additionally, the organization gathers and disseminates the most accurate and timely news relating to Down syndrome to educate the public, while actively and aggressively addressing social policy and legislatively-driven issues alongside state and local human service agencies. More information about MDSC can be found at http://www.mdsc.org, or by calling 1-800-664-MDSC.
SOURCE Massachusetts Down Syndrome Congress
http://www.mdsc.org