On the 23rd October 2009 Shiloh Pepin sadly passed away. This website is dedicated to the little girl that lived life to it’s fullest.
Shiloh Pepin
Shiloh suffered from Sirenomelia, an extremely rare disorder that meant her legs were fused together from birth. Throughout her life she faced inconceivable challenges and there was hope that she could overcome this last one, a lung infection that left her in critical condition at Maine Medical Centre. But this would be her last battle.
Sirenomelia affects just one out of every 100,000 live births and is usually fatal within a day or two of birth because of other complications associated with abnormal kidney and bladder function.
Born on August 4th 1999, to parents Leslie and Elmer Pepin, doctors gave Shiloh just days to live. But as she would do throughout her life Shiloh defied all the odds to stay alive.
Because she was born with just a quarter of her kidney Shiloh had to undergo two kidney operations in her short life; the second would change her life forever.
It gave Shiloh a love for life and for the first time she was able to do some of things other children her age like doing. She learned how to swim with the help of her swimming coach and she was able to attend her local elementary school.
This year, as she strived to become more independent, she left home for the first time to attend a weeklong summer camp. And in August Shiloh achieved the unimaginable when she celebrated her 10th birthday, a milestone doctors feared she would never reach.
Shiloh was an inspiration and will always be remembered as the upbeat little girl who didn't let anything bring her down.
The Foundation
Shiloh liked to have fun and was especially fond of playgrounds. Because she was confined to a wheelchair it was often difficult to find playgrounds that were handicap accessible. Shiloh always asked why there weren’t more accessible playgrounds in her area. A question that was difficult to answer.
In her memory, the Shiloh Pepin Foundation hopes to fund handicap accessible playgrounds and handicapped playground equipment for children with disabilities in Maine.
You can help by making a donation to Shiloh's fund.
