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Running and rolling for Rett
For Kelly Nagy, every dime will count towards a cure.
The Maple Ridge mom has been busy sewing bibs in preparation for the inaugural Walk, Run and Roll’n for Rett.
“It’s all about raising awareness,” says Nagy, whose daughter Brianne suffers from a rare neurological disorder called Rett Syndrome.
Named for the doctor who discovered it, Rett Syndrome is a development disorder that begins to show its effects in infancy or early childhood. It’s almost exclusively found in females and causes problems in brain function that can affect learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
Nagy’s daughter is confined to a wheelchair and suffers from seizures that come without warning.
Nagy and her husband Bill are familiar with the struggle families dealing with Rett Syndrome go through. Their daughter needs round-the-clock care and they’ve had to fight hard to get the province to help.
The experience prompted the Nagys to start the Rett Syndrome Society of B.C. in March, an organization that’s currently comprised of 50 families.
“All the money we raise goes to research and helping families,” she says.
“We are hoping to find a cure.”
The family hopes to turn the run into an annual event, held in conjunction with Rett Syndrome Awareness Month, which takes place in October.
• Walk, Run and Roll’n for Rett takes place Sunday. Oct. 20 at Maple Creek Middle School, 37000 Hasting Street, Port Coquitlam from 10 a.m. to 2 p.m. To learn more, visit rettbc.ca.