By Pat Doody
Ride 4 Rett
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Don crosses the finish with Scarlett
Tulare resident, Don Searcy, entered his first century cycling race when he rode Tehachapi's Gran Fondo on Sept. 17. He was riding to raise awareness of Rett Syndome, a rare genetic disease which attacks mostly girls in their first few years of life. Searcy's five year old granddaughter, Scarlett Parks, was diagnosed with the disease at the age of two.
Rett Syndrome was identified in 1966 by Dr. Andreas Rett. It occurs spontaneously, is not hereditary, but still affects one in every 10,000 to 15,000 live female births. There is no cure but the discovery of the main Rett Syndrome gene in 1999 has provided the base for current research of the disease. Researchers say that because the disease is so rare, very little is known about the long-term prognosis; however, many women can live well into middle age and longer.
The disease has affected all of Scarlett's muscles. She cannot walk, crawl or feed herself and she has digestive problems. She is speech impaired but her mother, Clarissa Parks, says that "she is very smart and talks with her eyes". It is their hope that Scarlett can eventually have a speaking computer that she can control with her eye movements. She started Kindergarten this year and goes to school on the school bus and takes her wheel chair. She has a full time school aid and so far seems to really like school.
Don, a 58 year old carpenter at Corcoran Prison, wanted to do something to bring attention to Rett research at Oakland Children's Hospital and to Katie's Clinic for Rett Syndrome in Walnut Creek, California where Scarlett is under the care of Dr. Mary (Jones). Searcy had been just an occasional cyclist for many years until his daughter, Clarissa, called him last April about a Gran Fondo cycling race in her home town of Tehachapi that would be held in September.
"Ride4Rett" was born with that call. Don set up a web page at http://www.generosity.com/community-fundraising/riding4rett to raise money for Rett research and a facebook page to publicize his ride. Then he started to train, riding every weekend and every chance he could find; eventually riding over 50 miles a day. He had ridden 500 miles by the end of Fondo sign-ups July 17. Clarissa said that her mom, Jody, told Don he was crazy. Then, around Labor Day, KMPH, the Fox station in Fresno began to follow his progress. Don rode 109 miles a little over a week before the Fondo, a ride that included the well known Rocky Hill Loop near Exeter, Calif. The evening before the race, when asked how he felt, Don said "anxious and a little nervous."
Searcy family photo from left to right: Scarlett's uncle Beau Searcy holding her cousin Hailey, grandma Jody, and grandpa Don (holding Scarlett), and mom Clarissa Parks, following Gran Fondo.
Don's plan was to hook Scarlett's bike trailer to his bicycle at Meadowbrook Park so she could ride the last few miles with him and cross the finish line. A spill in Bear Valley caused Don to shorten his ride a bit. Although he was unable to ride the portion of the century course that ran from Golden Hills to Keene and back, he completed over 70 miles and still crossed the finish line with Scarlett in tow. He said that he will be back next year and has challenged his family and even Dr. Mary to join Team Scarlett in his Ride4Rett.
After taking a few months off, Don said that he will begin training again in the spring, and is looking for other century races especially those closer to Katie's Clinic to Ride4Rett. Tehachapi will see him again next September.
