By Shaun Boyd
MONUMENT, Colo. (CBS4) – State lawmakers are coming together to help a Monument teenager and other Coloradans impacted by a rare genetic condition that causes people to eat uncontrollably.
Prader-Willi Syndrome is marked by developmental — and often intellectual — delays, but it’s hallmark feature is an insatiable hunger.
It is so dangerous, parents have to lock refrigerators, kitchen cabinets, even garbage containers.
“Morbid obesity occurs in very little time,” Charlotte Peterson of Monument told the House Health and Human Services Committee.
Her 15-year-old-daughter, Roxy, has Prader-Willi and is quite literally in danger of eating herself to death.
“She’s constantly distracted and driven by her constant hunger to seek food. She’s been able to manipulate her peers and school staff into giving her food or money to buy food,” Peterson said.
Peterson says her daughter will need supervision the rest of her life. While therapy helps, there is no cure.
“I’m trying hard,” Roxy told lawmakers. Rep. Chris Hansen is trying to help with a bill that would designate Prader-Willi Syndrome as a developmental disability, which is automatically eligible for state services like respite care.
“Right now, they have to basically prove to the state that they need the services, and it can be a very long process, and this would help to just really speed that up,” said Hansen. “And I think that’s really appropriate for the struggles and challenges they face.”
Roxy didn’t hesitate to tell lawmakers her opinion about the legislation.
“I’m in favor of this bill,” she said.
The bill passed without opposition out of the Senate and passed its first House committee with bipartisan support. Only two lawmakers voted against it, citing limited state resources and questions about need.