RAISING JOEY

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.