By Kathy Walsh
DENVER (CBS4) – Imagine having an insatiable appetite. That’s life for someone with Prader-Willi Syndrome (PWS). There is no cure for the rare genetic disorder but as we approach the national holiday that focuses on food, two mothers of children with PWS have organized a race to be held at Central Park in Stapleton.
Rachael Fischer and Julie Foge are fighting the syndrome with fitness and what better day than Thanksgiving.
“We wanted to do this race so our children can grow up with a tradition outside of the meal,” said Rachael Fischer.
Her 4-year-old son, Jude, was diagnosed with PWS when he was 2.
“It was devastating,” said Fischer.
The parents of 16-month-old Eliza Foge got the diagnosis at 2 weeks.
“The second I got it, I wanted them to take it back,” said Eliza’s mother, Julie Foge.
The kids have low muscle tone and speech and developmental delays. They get nightly injections of growth hormones and spend hours in physical and speech therapies. Between 3 and 8 years old, people with PWS begin to develop insatiable hunger.
“As he’s (Jude) gotten older, there is more of an awareness of food,” said Fischer.
There’s a lock on the pantry door to discourage Jude. The fear is obesity and its complications.
“And that’s the part that really limits their ability to live a completely independent life,” said Foge.
The mothers first met in January. Fast friends, the two started the Thanksgiving Day Harvesting Hope 5K to create a family tradition other than eating.
“The money is all going to the Foundation for Prader-Willi Research and that’s where the hope comes in,” said Foge.
It is hope of developing treatments and hope that hundreds will embrace a new way to give thanks.