RAISING JOEY

Down Syndrome FAQ

Down syndrome or Trisomy 21 is a genetic disorder where there is part or a whole extra 21 chromosome present. Rather than going into great detail about what Down syndrome is and how it affects people who have it, how about a list of 21 things about Down syndrome?

1. One in every 800- 1000 babies is born with Down syndrome.
2. In the United States, approximately 350,000 families are affected by Down syndrome. Approximately 5,000 children with Down syndrome are born each year.
3. Down syndrome is not related to race, nationality, religion or economic status.
4. Individuals with Down syndrome are people first, with the same rights and needs as everyone else.
5. Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small and medium sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
6. There’s no “S” on Down… it is Down syndrome (not Downs syndrome)
7. Rather than saying “Down syndrome baby/child” say “A baby/child with Down syndrome. This values the person before the syndrome.
8. The s on syndrome is not capitalized.
9. Down syndrome is not an illness. A person either has Down syndrome or they do not. Having Down syndrome does not mean the person is sick.
10. There are three types of Down syndrome- 1. nondisjunction, 2. mosaicism, 3. translocation (Joey has nondisjunction).
11. Down syndrome occurs when there are three, rather than the usual two, copies of chromosome 21 in every cell of the body. Instead of 46 chromosomes, a person with Down syndrome has 47.
12. The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
13. People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
14. Down syndrome happens before conception. There is nothing either of the parents did, or didn’t do, to cause it. It happens when the egg or sperm, is produced with an extra copy of chromosome 21.
15. Down syndrome is a Trisomy which means there are 3 copies, instead of 2, of any given chromosome. Down syndrome is also known as Trisomy 21 because of the extra 21st chromosome.
16. It was Dr. Jerome Lejeune that first discovered Down syndrome in 1959, when he found the extra 21st chromosome. Some people give credit to John Langdon Down for discovering Down syndrome but he just first described the common characteristics attributed with Down syndrome.
17. Common characteristics that people who have Down syndrome may have include single transverse palmar crease (a single instead of a double crease across one or both palms), almond shaped eyes, a larger than normal space between the big and second toes, and white spots on the iris known as Brushfield spots.
18. Thankfully, due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. Now close to 80 percent of adults with Down syndrome reach age 55, and many live even longer.
19. In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. Click here for a comprehensive list of Down syndrome organziations throughout the United States.
20. Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The degree of mainstreaming is based in the abilities of the individual; but the trend is for full inclusion in the social and educational life of the community.
21.  People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Just look at Sujeet Desai and Carrie Bergeron!

A Special Joy
The makers of Parenting & Baby Talk Magazines have been showcasing some of our babies who just happen to have Down syndrome on their website! You might see a couple other familiar faces including Joey and some of our other online friends including Georgia, Rhett, Elliot, and Braska!!

A Special Joy: Babies With Down Syndrome

One

Two

Three

Four

Five

Six

Seven

Eight

Nine

Ten

Eleven

Twelve

Thirteen

Forteen

Fifteen

Sixteen

Seventeen

Eighteen

Nineteen

Twenty

Twenty-One

Twenty-Two

Twenty-Three

Celebrities & Artists Who Have Down Syndrome

• Chris Burke
• Eddie Barbanell
• Jane Cameron
• Melissa Riggio
• Michael Jurouge Johnson
• Sujeet Desai

What do all of these people have in common?

• Charles Darwin (naturalist)
• Albert Pujols (St. Louis Cardinals first baseman)
• Cathy McMorris Rodgers (Washington Congresswoman)
• John C. McGinley (actor)
• Eva Longoria (actress)
• Gene Stallings (Arizona Cardinals headcoach)
• George Will (journalist)
• Arthur Miller (American playwright)
• Jamie Foxx (actor)
• Jim O’Brien (Indiana Pacers coach)
• Emily Perl Kingsley (Sesame Street writer & author of Welcome to Holland)
• Heath Bell (San Diego Padres closing pitcher)
• Charles de Gaulle (French military leader)
• Roy Rogers & Dale Evans (actor & actress)
• David Ragan (NASCAR driver #6)
• Sarah Palin (Alaska’s governor)
• Julie Newmar (Actress- original Catwoman)
• Lowell Weicker (the former Govenor of Connecticut)
• Rex Hudler (retired baseball player & Angels Baseball announcer)
• Damon Hill (Formula One Racecar Driver-1990’s)
• Halle Berry (actress)
• Joe Diffie (country music artist)
• Pete Sessions (Texas Congressman)
• Trent Whitfield (Hockey player- Peoria Rivermen captain)
• Cullen Douglas (actor)
• Frank Sesno (CNN special correspondent)
• Hubert Humphrey (Former US Vice President)
• Buddy Bell (retired baseball player & manager)
• Aaron Beasley (Atlanta Falcons player)
• Beverly Beckham (writer for Boston Globe)
• Bob Hennefer (Professional golf player)
• Beau Geisler (hockey player, Stockton Thunder defenseman)

Click here to find out!

Siblings & Down syndrome

What the other children are thinking: Brothers and sisters of persons with Down syndrome. By Dr. Brian Skotko

We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen

The Best Worst Brother by Stephanie Stuve-Bodeen

Our Brother Has Down Syndrome by Shelley Cairo

Life is far from ordinary for these kids.
Teens talk candidly about growing up with a sibling who has special needs.
By Gail Rosenblum, The Star Tribune

Down’s Syndrome Association’s publication on Siblings & Down syndrome.

The Other Kid

Looking for a great place to find t-shirts, hats & bumper stickers that promote Down syndrome awareness? Check out these cool websites!!

Three Twenty One Down Street Press

Fickle Zeal, So much to love, so little time

Down Down Baby

T-21 Club

BSB Creations