A local family has dedicated this week to raising awareness of Prader-Willi syndrome. Tammy Renwick’s daughter Kaitlyn has the rare genetic disorder, which affects her hypothalamus, causing behavioral issues, speech delay, and insatiable hunger.
“They don’t know when they’re full so they’re always hungry; they’re constantly looking for food. Our food is locked up so that my nine year old daughter can’t reach it.”
Roughly one in every 15,000 children are affected by PWS, but it’s not very well known in the rest of the community. Renwick says her goal is to try and eliminate some of her daughter’s challenges through research.
“With her it’s her chromosome; she’s got one turned off, basically. So they’re trying now to start research on how to turn them back on. I’m still a believer that if it’s genetic, you look for a treatment, right? We never thought about curing.”
Kaitlyn attends Derek Taylor school along with another girl with the syndrome, and last Friday, staff and students wore blue to show their support. A walk will also be held Saturday in Muskoseepi Park as a fundraiser for One Small Step with proceeds going towards a Prader-Willi syndrome research plan.
Registration starts at 1 p.m.