STOP PRESS!!!
ON 11 APRIL, 2011, 29 BRAVE VOLUNTEERS WILL BE SKYDIVING IN MEMORY OF A BRAVE LITTLE BOY CALLED FRANKIE FORGIONE WHO DIED OF A RARE BRAIN DISEASE AND TWO CHARITIES THAT DIRECTLY SUPPORTED FRANKIE AND HIS FAMILY!
All 33 volunteers will be making a tandem skydive with the Silver Stars military freefall display team. The event will take place from 9.30 on 11 April, 2011, at South Cerney near Cirencester, Gloucestershire. All volunteers have elected to make a self-funding jump to ensure that all monies raised from sponsorship will go directly to Save Babies Through Screenining Foundation and Derian House.
Every pound raised will count!
PLEASE SHOW YOUR SUPPORT BY SPONSORING THIS WORTHY EVENT!!!
Frankie's Story:
Frankie was diagnosed on the 15th March 2010 with the rare brain disease, Krabbe Leukodystrophy. This disease is terrible.
Krabbe Leukodystrophy most often affects infants, with onset before age six months, but can occur in adolescence or adulthood. Symptoms include irritability, unexplained fever, limb stiffness, seizures, feeding difficulties, vomiting, and slowing of mental and motor development. Other symptoms include muscle weakness, spasticity, deafness, and blindness. There is no cure for Krabbe disease and is generally fatal before age two. Krabbe is a rare genetic disease, it effects less than 1 in 100,000. This does not meanthe effects on the children and family are any less, this is a devasating disease.
After Frankie was diagnosed within weeks he was a shadow of his former self. Frankie could no longer hold his head, swallow, smile or see. Frankie was a lovely boy, son, grandchild, newphew, friend and sadly passed away on 1 January, 2011.
Frankie cauptured the hearts of many people and his story has inspired all 33 volunteers to jump in his memory and support the two charities that gave direct support to him and his family.
Krabbe Leukodystrophy most often affects infants, with onset before age six months, but can occur in adolescence or adulthood. Symptoms include irritability, unexplained fever, limb stiffness, seizures, feeding difficulties, vomiting, and slowing of mental and motor development. Other symptoms include muscle weakness, spasticity, deafness, and blindness. There is no cure for Krabbe disease and is generally fatal before age two. Krabbe is a rare genetic disease, it effects less than 1 in 100,000. This does not meanthe effects on the children and family are any less, this is a devasating disease.
After Frankie was diagnosed within weeks he was a shadow of his former self. Frankie could no longer hold his head, swallow, smile or see. Frankie was a lovely boy, son, grandchild, newphew, friend and sadly passed away on 1 January, 2011.
Frankie cauptured the hearts of many people and his story has inspired all 33 volunteers to jump in his memory and support the two charities that gave direct support to him and his family.
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Thank you for your time and generous support!
