Hendricks County families invite community to support children with rare genetic condition

Hendricks County families invite community to support children with rare genetic condition

HENDRICKS COUNTY, Ind. (WISH) – A Hendricks County family is asking for support to help children fight back against a life-threatening genetic condition. It’s called Prader Willi Syndrome.

Emma Walker was diagnosed with Prader Willi Syndrome as an infant. Now, she is six years old and lives in Avon.

When she was diagnosed, her parents were told she wouldn’t be able to control her emotions, she would have constant false hunger cues, and, because of low muscle tone, she wouldn’t run. Well, Emma just completed a track program at the YMCA in Avon. Her parents tell News 8, she continues to prove doctors wrong.

Emma lives with a very strict nutrition plan to limit sugar addiction and control the insatiable appetite that comes with Prader Willi and her family actually mentors and supports other central Indiana families who have children with Prader Willi Syndrome.

On Saturday, September 14, the Walker family and others affected by the condition will walk to raise money for research.

Prader Willi Syndrome is rare. The Foundation for Prader Willi Research said it affects about one out of every 15,000 people and the biggest challenge for those with it is avoiding morbid obesity. The Walker family is hoping research into the condition may also bring valuable knowledge and ways to battle the obesity epidemic as a whole.

Emma’s mother Teresa Walker said the walk is to celebrate everything that Prader Willi Syndrome is and those who are fighting back against the condition.

“It’s never about doom and gloom for us. We know that it’s life-threatening, but we don’t get anywhere dwelling. We get exactly where we need to be by working,” Walker said.

The One Small Step for Prader Willi Syndrome walk is at Washington Township Park in Avon on Saturday, September 14 from 1:30 p.m. until 4 p.m. It is free and open to the public.