PARKVILLE, Mo. - A group of metro moms is raising awareness for a rare genetic disorder called Rett Syndrome, a devastating neurological disorder that affects more than 350,000 children and adults.
“Girls [with this condition] tend to develop normally until they’re about a year-and-a-half-old, and then if they have Rett Syndrome, they regress. They lose the ability to walk, to talk and a whole host of other symptoms,” said Tim Freeman with the Rett Syndrome Research Trust.
On Thursday evening, eight metro area moms organized a fundraiser to help raise money for research into this disease.
“The closest thing right now is gene therapy, and they say they’re within a year of trials for Rett Syndrome. So I thought, 'I have to do something,'” said Heather Caster, co-organizer of Thursday’s Reverse Rett fundraiser in Parkville.
Caster said she noticed changes in her daughter Piper when she was about eight months old.
“She never really crawled. She sat up really well, and then she didn’t all of a sudden. She would just fall over. She started screaming uncontrollably,” Caster said.
Piper is now eight years old and requires round-the-clock care.
“We’ve all learned how to adapt to our situation," Caster said. "Most days are OK, but there are special things that we have to. I sleep with my daughter every night because she has seizures."
Rett Syndrome is caused by a random genetic mutation. RSRT is behind a strategic plan called "Roadmap to a Cure" that prioritizes the research that could lead to a cure for Rett.
“The exciting news about Rett research is that it’s been reversed in mouse models of the disease," Freeman said. "We know the gene that causes Rett Syndrome, which distinguishes it from other neurological disorders and makes a cure possible.”
For more information about Rett Syndrome and the Rett Syndrome Research Trust, visit this site.