A lot of parents hope their children will change the world, but in the case of 3-year-old Sophia Whitten, it might really be true. When Sophia’s mother, Michelle Sie Whitten, learned she was going to have a baby with Down syndrome, she got busy.
She researched treatment options, therapies for speech and cognition – and efforts to eradicate or treat the condition.
What she found was disappointing. So Whitten decided if nobody was going to push for progress, she’d do it herself.
“What we want to work on is, how do we make Colorado the best place for people with Down syndrome to live,” Whitten said.
It’s been only three years since Sophia was born, and in that time Whitten has made remarkable progress.
Last May, the Anna & John J. Sie Foundation – established by Whitten’s parents – gave a total of $1 million to 13 research projects across the country.
Whitten’s father, John J. Sie, founded PrimeStar Partners and the Englewood-based Starz Encore Group, which provides movie channels to about 151 million subscribers worldwide. The name has since been changed to Starz Entertainment Group.
This weekend, the Rocky Mountain Down Syndrome Educational Fund, which was created by the Sie Foundation, is hosting its second symposium for educators and parents.
Sue Buckley, founder of the Down Syndrome Education Trust in England, will speak Friday and Saturday at the Hyatt Regency Tech Center in Denver.
The Friday session is designed for teachers; Saturday’s is for parents.
“Before we started this fund, there were no dependable, consistent educational programs for people with Down syndrome or their families in Colorado,” Whitten said.
Though the March of Dimes estimates that the condition affects more than 350,000 in the United States – an estimated 6,000 in Colorado – Down syndrome gets less than its share of research dollars, said Erin Geller, of the National Association for Down Syndrome.
In 2003, the National Institutes of Health, the nation’s largest funder of medical research, directed $23 million to Down syndrome.
By last year, that amount had fallen to $14 million.
The Sie Foundation is adding private money to that increasingly scarce public fund.
“We’re very excited about the Sie Foundation,” Geller said.
Jim Sikela, a professor of human medical genetics at the University of Colorado health sciences center, probably wouldn’t be studying Down syndrome without the Sie Foundation’s financial incentive.
Sikela was researching brain function when he attended a science symposium the Sie Foundation hosted at CU in 2006.
He heard researchers talk about stimulating the circuits that carry brain activity, about reversing the loss of cognition, and the benefits that progress on Down could bring to those with Alzheimer’s and other degenerative conditions.
Now, with a grant from the Sie Foundation, Sikela is trying to determine which genes on chromosome 21 cause which manifestations of Down.
“The hope is that we could find one, or a few, genes on chromosome 21 that are very important to cognition. Those would be potentially very good drug-therapy targets,” Sikela said.
Whitten knows that kind of therapy may not ever be available for Sophia. Still, she believes in the possibility that drugs or some other treatment – or the sheer force of her own will – will give her daughter a chance at a full life.
“We all have hopes for our kids,” Whitten said. “Mine aren’t any different for Sophia,” she said.
Staff writer Karen Augé can be reached at 303-954-1733 or kauge@denverpost.com.
About Down syndrome
Down syndrome is a genetic condition in which babies are born with an extra copy of chromosome 21. It is the most common genetic abnormality – occurring in one out of 800 births.
Down syndrome impairs intellectual development and can cause physical complications such as heart defects, vision and hearing problems, and intestinal malformations.
The March of Dimes estimates that the condition affects more than 350,000 people in the United States and 6,000 in Colorado.
