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Kids join battle against rare disease
Westwood pair, and parents, join strollathon
By Brenda Sexton
Rett Syndrome is a genetic/neurological disorder that renders its victims unable to walk, talk or use their hands functionally. Sometimes it affects respiratory functions.
It is the leading genetic cause of severe impairment in girls and it is the only autism-spectrum disorder with a known genetic cause. It affects one in every 10,000 to 15,000 female births and two of its prey live in Enumclaw - 8-year-old Libbie Chakwanda and 7-year-old Sasha Walker Dickson.
In addition to Rett Syndrome, the two have other things in common. Both are students at Westwood Elementary School where they are part of a self-contained special needs classroom. Along with their parents, both were on the ground floor of an annual fund-raising “strollathon” that raises money for the Rett Syndrome Research Foundation (RSRF).
This year's strollathon takes place June 3 at Bradley Lake Park in Puyallup.
According to Libbie's mom, Sarah Chakwanda, this is the third year for the event, and just as important as the money it raises for research is the awareness it brings to the public.
Chakwanda said Libbie was a typical child until she was 9 months old when she started to show signs of developmental delays. She was diagnosed with Rett Syndrome at 3, the same year, Chakwanda said, researchers found the gene that causes it.
“She's never been able to walk. She's never been able to talk,” Chakwanda said.
Despite those disabilities, “She's incredibly happy,” Chakwanda said. “She loves life most of the time.
“She's taught me so much,” she continued. “Obviously, she's a challenge to raise, but everyone who meets her falls in love with her.”
Chakwanda said Libbie will likely require high-needs care for the rest of her life unless research turns up some answers. She's pinning her hope on research and said huge strides are being made.
“The research is promising and that's our hope. Without that, Libbie is kind of trapped in her own body,” Chakwanda said.
Each year the RSRF Strollathon raises about $20,000. Donation forms are available at the Web site www.rsrf.org. All donations, Chakwanda said, go to research.
Brenda Sexton can be reached at email@example.com.