Tim Norton was devastated when his daughter was diagnosed with Down syndrome shortly after her birth.
He envisioned her growing up tragically disabled. The years ahead seemed filled with darkness.
A chance encounter on a ski slope, just a few months after his daughter was born, changed Norton’s outlook on Down syndrome and the prospects for his daughter’s happiness.
While skiing near his home in Massachusetts, a gifted teenage skier with Down syndrome, Melissa Joy Reilly, glided past him at the crest of a hill.
Norton had noticed Reilly earlier in the day but said nothing.
“Melissa stopped in front of me and said, ‘Hello, how are you?’ ” says Norton, of Westford, Mass. “I said, ‘Great. What a great night to be skiing.’ “
And, just like that, Norton’s life was changed.
“Without her even knowing it, without her even trying — it was quite remarkable — I got just the positive lift that I needed,” says Norton, whose daughter, Margaret, is now 7.
“She opened my eyes to what the possibilities could be for my daughter,” says Norton, a ski instructor. “It was like, ‘Wow, this isn’t a big black hole. This is a girl who can walk and talk and ski.’ “
Like Norton, many people are surprised to learn of the dramatic improvements in health and quality of life for children and adults with Down syndrome.
Advocates for people with Down syndrome feel a new urgency to spread the word about these advances, as more women undergo prenatal tests for Down syndrome and other genetic conditions.
The lives of the 250,000 Americans with Down syndrome today are radically different than a generation ago, says Brian Skotko, co-director of the Down syndrome program at Massachusetts General Hospital.
People with Down syndrome now live to an average of 60 years, according to the national society. Just a generation ago, they lived to an average of only 25.
Many graduate high school. Some take college classes. Some get married. About one in five has a job, says pediatrician Kathryn Ostermaier, medical director of the Texas Children’s Hospital Down Syndrome Clinic.
On May 5, 36-year-old named Karen Gaffney will receive an honorary doctorate from Oregon’s University of Portland. University officials believe she may be the first person with Down syndrome to receive such a degree.
And the best may be yet to come, Skotko says. Thanks to early intervention, better therapies and educational opportunities, the generation of children with Down syndrome today may be the most accomplished ever, he says.
In March, a 15-year-old Oregon boy became one of the first people with Down syndrome to climb to a base camp on Mount Everest — a height of 17,600 feet.
Research by Skotko and others finds that life with Down syndrome is far happier — for parents, siblings and children themselves — than most imagine.
One of Skotko’s studies showed that among more than 2,000 parents on the mailing lists of Down syndrome organizations, only 4% of parents regretted having a child with the condition.
Nearly 99% of people with Down syndrome say they’re happy with their lives, and 96% say they like how they look, Skotko’s survey found. Among siblings, 88% say their brother or sister with Down syndrome has made them a better person. There’s a chance that these surveys paint an overly sunny picture, Skotko says, because people who belong to Down syndrome groups may be better off than those who lack this connection.
Advances in Down syndrome “need to be a part of prenatal counseling,” says Ostermaier, an assistant professor at Baylor College of Medicine. “As physicians, we’re supposed to give people accurate information so they can make informed decisions.”
Children with Down syndrome do face additional health challenges. They have a greater risk of respiratory problems, certain rare leukemias and are more likely to need surgery to correct bowel and colon problems.
About half of babies with Down syndrome are born with congenital heart defects. In the past, many died at birth. Today, surgeons can repair heart defects.
Children with Down syndrome today also can benefit from a variety of early interventions, she says. These include: physical therapy; occupational therapy; speech and language therapy; and feeding and swallowing therapy, to assist with problems caused by low muscle tone.
Because babies with Down syndrome tend to be “visual learners,” they can learn to communicate with sign language months or years before they master speech, Ostermaier says. Boston-area mom Melissa Coe is already teaching her daughter, 14-month-old Lily, to signs words such as “father.”
Specialized preschools also can help kids with Down syndrome make the transition to a regular kindergarten class, Ostermaier says.
New therapies may one day help alleviate some of the symptoms of Down syndrome, such as intellectual impairment, Ostermaier says. Preliminary clinical trials are now being done with drugs designed to improve memory and learning.
Reilly, now 26, illustrates what people with Down syndrome can accomplish when allowed to reach their full potential, Skotko says.
She remains an avid skier. In February, Reilly won a silver medal in the slalom competition at the Special Olympics World Winter Games in South Korea.
She often accompanies Skotko as he teaches doctors and medical students about Down syndrome.
Skotko says even doctors often know relatively little about Down syndrome. Surveys show that medical students and residents get little training on the condition.
It’s important, Skotko says, for people with Down syndrome to tell their own stories.
Skotko, whose sister has Down syndrome, credits her with teaching him lessons about patience, kindness and perseverance.
While learning to ride a bicycle was easy for him, Skotko says it took his sister three summers.
“She is a life coach for all of us in the family,” Skotko says. “She has taught us so many life lessons about how to be patient when the world wants the answer now, how to keep on going when others may quit.”
Reilly, who lives with her parents, is more active than most Americans: swimming, bicycling, even kayaking in Alaska.
She works as a teacher’s aide once a month. And she works for a state senator two days a week, taking the train into Boston by herself. She handles mailings, makes deliveries and answers phones.
“I love everything” about her job, Reilly says. “I have a lot of friends at work. They all think of me as part of the office …
“People with Down syndrome and other developmental disabilities are very can-do people,” Reilly says. “They are very able.”
Norton, who has gotten to know Reilly and her family well, says she continues to inspire him:
“I hope my daughter grows up to be just like her.”
SINCE YOU’RE HERE…
… we have a small favour to ask. Hurn Publications is editorially independent, meaning we set our own agenda. Our journalism is free from commercial bias and not influenced by billionaire owners, politicians or shareholders. No one edits our editor. No one steers our opinion. This is important because it enables us to give a voice to the voiceless, challenge the powerful and hold them to account. It’s what makes us different to so many others in the media, at a time when factual, honest reporting is critical.
If everyone who reads our reporting and writing, who likes it, helps to support it, our future would be much more secure. We ask that you follow us and subscribe to our publication.