SARATOGA
TODAY
Friday, April 15, 2011
NEWS
7
Jake’s Help From Heaven by Yael Goldman Saratoga TODAY The Straughters recently launched Jake's Help From Heaven, a nonprofit to help individuals like their "medically fragile" five-year-old son Jake, who passed away in December. Jake endured his first seizure at eight months old, thus beginning a very complicated life with multiple illnesses and disabilities. He battled epilepsy, liver disease, osteopenia, femur fractures, and hip dislocation among other painful injuries. Despite his handicaps, Jake demonstrated remarkable perseverance and inspired his family to take action. "He was so resilient and strong; he taught us about bravery and handling the card you're dealt with grace," Heather said. Heather brought awareness to the Capital Region through the Stroll for Epilepsy in Saratoga Springs, which raised $55,000 in its inaugural year and more than $60,000 in 2010 to fund research and awareness for a disorder that little is known about. The goal was to educate the community and help researchers find answers for parents like Heather and Brian who never received an official diagnosis for Jake's illness, although at the time of his death it was thought that he had a type of leukodystrophy, a group of disorders characterized by progressive degeneration of the white matter of the brain. With Jake is no longer with them, the Straughters have shifted gears: they are helping individuals and families that cannot wait for advances in medicine because they require treatment now. Through their experiences - countless trips to and from Boston, 117-day hospital stays, purchasing expensive equipment and medications, surviving fear and working for advocacy the Straughters realized they now have a valuable resource to share with parents and individuals in similar situations. Through the foundation, and in Jake's memory, the Straughters are helping others afford the astronomi-
cal cost of living with a debilitating condition. "Life with a medically complicated child is not easy," she said. Brian and Heather explained that Jake had to see specialists and, like many other children with a rare complication, that meant traveling great distances for treatment - often times unexpectedly. "For a medically fragile child, something like an ear infection becomes very scary," Heather said, explaining that Jake saw a pediatrician in Saratoga, but was often deferred to a team of specialists at Mass General. What's more, a trip to Boston for a doctor's visit is not a just three-hour drive for a child like Jake: "It's a difficult journey." Jake needed time to recover from the drive before seeing his physicians, and, similarly, couldn't get right back in the car after his appointment. "One doctor visit could mean two days in a hotel," she said. "We know it's very cost-prohibitive. We want to help cover those costs so that travel is affordable, so that kids can get a second opinion," she said. The foundation will reimburse families for the cost of their journey: the hotel stays, gas and up to $30 a day for other expenses. Grants are also available for prescriptions, which can have an "astronomical" price tag, Heather said. An equipment exchange goes hand-in-hand with the grant program and the foundation's mission to help individuals afford care. Brian explained that Jake needed specialized medical equipment unique items like his sophisticated car seat, video monitor, stander and chair, which were extremely expensive. The Straughters have made Jake's equipment available for other children to use as long they need it. Once returned to the foundation, the equipment will be inspected and reassigned. The goal is to gather more equipment through donations and establish an "equipment clearing house," to help families all over the capital region.
Although the Straughters originally planned the foundation with the intent to help children, they realized that adults should also be able to apply for help from Jake. "We thought Jake would be with us for a long time, that we would always be taking care of him," she said. "It was unlikely that he would be independent, which is why our outreach quickly turned from children to anyone with an illness that affects their ability to live life independently." Through the foundation's grant program, Jake, who was known as a strong vibrant boy, is giving his family the inspiration and ability to help others endure similar struggles. They are offering this assistance to individuals living within a 100-mile radius of Saratoga Springs. And, with Jake's Help From Heaven already accepting grant applications and supplying equipment, the Straugthers have successfully begun their second journey with Jake. They're picturing him in a happier place, free from the restrictions that made his short life so difficult. His older brother Ethan said it best: "He's not having any more seizures." Get involved: Jake's Help From Heaven is hosting a full day of family fun and fundraising on Sunday, May 1 in Saratoga Springs. Community members can enjoy two hours of bowling and family fun at Saratoga Strike Zone, beginning at 1:30. For $20 per person, participants
Photo provided
The Straughter family (Heather, Jake, Brian and Ethan) together for Easter in 2010. can enjoy ballocity, bumper cars, four tokens for the arcade, two slices of pizza and soda, plus raffles, face painting and much more! An earlier bowling event, which is already sold out, begins at 11 am. Families can also enjoy a delicious meal at Jacob and Anthony's to benefit Jake's Help From Heaven throughout the day. Participants must present their server with a coupon (available at www.jakeshelpfromheaven.org), and a portion of their bill will immediately go toward the Straughters’ cause. For more information, visit www.jakeshelpfromheaven.org.