For the love of Eva
Community comes together to save a little girl with Rett Syndrome, By Edie Johnson Campbell Hall Political figures, friends, relatives and neighboring well-wishers gathered Saturday at the Fini house, perched on a hilltop overlooking the valley, to raise funds for a little girl with Rett Syndrome. Albert Fini, a builder in the Goshen area, and his wife, Aimee, established the Eva Fini Fund in honor of their daughter. Every year the Finis host an “Evening of Hope” that a way will soon be found to reverse Eva’s symptoms. The foundation contributes the money it collects to the Rett Syndrome Research Trust, one of the most promising research groups working on the disorder. But on this night the emphasis was not on genes or clinical tests. The love and support shown at the “Evening” was immense. Pulling up to Buena Vista Court, one might be confused about where it was every house along the road displayed blue balloons supporting Eva and the family’s work. A huge sign on the corner read “We love you Eva.” The many people who gave exceptional donations were dubbed “Eva’s Knights,” “Eva’s Heros,” and “Eva’s Champions.” Hudson Valley businesses donated hundreds of gifts for the auction trips to Mexico, Bethel Woods concert tickets, quilts, chocolates. If love alone could cure Eva, she would be well today. Eva’s beauty belies the challenges she faces. Still, there is much reason to hope. Her ability to function and interact has improved through intensive therapy and years of hard work. See “A Day in the Life of Eva,” a video created by her sisters, at www.youtube.com/watch?v=Ta_9h0H1Ufkandfeature=share. Many children with Rett Syndrome are not as lucky as Eva, who has hours of daily therapy and unconditional support. The streams of Youtube videos made by other families fighting the disorder show that the Finis are not alone in working to make Rett Syndrome the first reversible brain disorder. To help Eva and others with Rett Syndrome, make contributions payable to The Eva Fini Fund at RSRT, P.O. Box 998, Goshen, NY 10924. For more information, visit www.evafinifund.org.
A disorder that devastates girls
Rett Syndrome is a devastating neurological disorder that afflicts girls almost exclusively; one out of every 12,500 girls have the disorder. Girls born with Rett appear normal at birth, but at about 18 to 24 months of age, many of their motor and communication skills curiously disappear.
Rett affects motor functions so severely that afflicted girls cannot walk. They are subject to seizures, digestive disorders, scoliosis, and irregular heartbeats. The severity of disability and the ability of girls to recover ranges widely. Most girls with Rett will need assistance into adulthood.
According to the Mayo Clinic, after the illness reaches its apex, many girls slowly regain their ability to talk and make eye contact.
Boys are rarely affected because an imperfect female gene causes the problem. Only boy infants with an extra gene have the disorder. Few of them make it through pregnancy to birth.
The disorder is caused by a mutant gene, discovered in 1999. Ever since, researchers have been furiously trying different treatments, including stem cell transplants, gene replacement, and gene nourishment, modification and bypass. Rett is often characterized as a form of autism. But as researchers close in on its cause, they are coming to believe it belongs in a separate category. Some pre-clinical trials have successfully reversed symptoms. This real chance to make a difference in girls’ lives has created an urgency to continue research.