A recently formed society is hosting a fundraiser this Sunday that aims to increase awareness of a neurodevelopmental disorder that primarily afflicts girls.
The Rett Syndrome Society of BC's first annual Walk, Run and Roll for Rett will happen from 10 a.m. to 2 p.m. at Maple Creek middle school in Port Coquitlam, said society president Christinea Walker, who is aiming to raise $5,000. All money gathered will be donated to help with research projects.
The disorder is the most severe form of autism and Walker said British Columbia is "extremely under-serviced" for support compared to eastern provinces and other countries.
Rett syndrome's clinical features include small hands and feet and a deceleration of the rate of head growth. Children will typically exhibit repetitive hand movements such as wringing and/or putting hands in the mouth. They are also non-verbal.
"It's quite a devastating disorder," said Walker, whose 11-year-old daughter Kayla has Rett.
Eventually, she would like to organize a clinic to enable girls "to be wholly looked at medically" instead of having to visit multiple specialists who only focus on a single area of the patient's health.
Walker noted that many doctors are still working from old literature. And previous research erroneously assumed that the girls couldn't learn but technological advances in computers that track eye movements - such as the one Kayla uses - have proven the opposite.
"Parents are fighting to get doctors to see what we see," she added.
