Rett Syndrome is a devastating neurological disorder that occurs almost exclusively in females. It's rare, and there is no treatment. That's why a Chico family is working to get the word out, with hopes of finding a cure.
Five year old Alexis Herrick is one of maybe 200 thousand girls and women in the entire world...who have Rett Syndrome. It's a genetic disorder on the Autism Spectrum, that's usually diagnoses when girls are six months to a year and a half old. Angela Herick says, "Most girls are non verbal, non ambulatory, they have digestive issues, seizures, respiratory issues. really suffering. They can't speak for themselves, fight for themselves, so those of us who can have to do it for them."
Angela's daugher Alexis is an anomaly for Rett girls...because she can move aboout. But she rarely stops fidgeting or moving...and drugs are needed to help her sleep at night. Her family relies on the help they found at Katie's Clinic" ... founded at the Children's Hospital of Oakland, by a Rett's child family. "We get to see world renown geneticists, pediatric specialists, speech therapist, occupational therapist, and physical therapist. we can take our girls there and see all of these people at one time."
Angela Herrick is now Northern Califonria's repreresentative for the International Rett Syndrome Foundation. She's coordinating a "Strollathon" in Bidwell Park ... to help raise money for family support,advocacy and research. She says,"Rett Syndrome is an orphan disorder...no one's heard of. only families are relied upon to get funding for this. That's what i feel like my job is now, as the mother of a Rett girl."
The "Stroll and Roll for Rett"...Walk and Roll-a-thon.... takes place next Saturday, October 17th. It starts at Cedar Grove and ends at the one-mile recreation area in Bidwell Park. Contact alexisdream.org or rettsyndrome.org for more information. ###
