Jackson Epstein

My name is Jackson. If you donate some dollar bills, I could go up some hills…on my new bike! I won’t be a slouch, laying on my couch! Help me get a bike, so I can go on a hike!

Jackson was born with a rare muscle disease called Central Core Disease. It is a form of congenital muscular dystrophy and affects Jackson in many ways. It causes general muscle weakness, so Jackson cannot walk independently and relies on a manual wheelchair, forearm crutches and a walker to ambulate. The disease also causes many medical issues such as fragile bones, restrictive lung disease and scoliosis. Jackson is followed by many medical specialists for his disease and gets infusions for his bones twice a year, pulmonary function testing twice a year and many x-rays and other tests to monitor his disease. Jackson was also born with both of his hips displaced and had nine hip-related surgeries to repair them along with many days inpatient at the hospital and hundreds of hours of rehabilitation and physical therapy.

In spite of his disease, Jackson is a creative, intelligent and fun 11 year old child with a positive outlook. He started sixth grade this year and his favorite subjects are math and science. Jackson plays the cornet and the viola, and loves learning about the periodic table of elements. Jackson hopes to one day attend MIT and become a chemist and a physicist. He has been playing competitive sled hockey with the Philadelphia Hammerheads since he was 5 years old. Last year, Jackson completed his first half marathon! Jackson also enjoys swimming, playing video games on his Nintendo Switch and spending time with family and friends. His best buddy is his rescue cat Neon, who he named after the element from the periodic table!

Jackson had a very busy life before COVID-19 with sled hockey practices, games and tournaments. Jackson also had weekly aquatic therapy sessions (great low impact strengthening for his muscles) and school based physical therapy weekly. After being confined to the home most of the time due to his high risk with COVID-19, Jackson’s physical activity was significantly reduced. Virtual therapies and weekly in person physical therapy had been helpful, but Jackson has not been able to be as active as he was prior to social distancing.

Jackson was creative given his situation during quarantine and wanted to find creative ways to stay fit. He created a YouTube channel where he posts videos for other kids with physical disabilities to stay fit and have fun. He even taught wheelchair yoga and wheelchair aerobics classes to help raise money for the Muscular Dystrophy Association during two of their recent national events. Jackson’s overall endurance has significantly decreased though, so we need activities to help him consistently stay fit while social distancing.

Your support would help us obtain a new custom adaptive bicycle for Jackson, which will be outfitted with a Flyers theme for this hockey fan! This new bicycle will allow Jackson the freedom to exercise in our neighborhood, and on secluded local paved trails with friends. The lightweight and easy to operate bicycle will enable Jackson to ride it for longer periods and allow us to transport it in the car to local trails. It will give him the opportunity to pedal with his feet to strengthen his legs, and use his hands to pedal when his legs get tired.

Family and friends of Jackson Epstein are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Jackson has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!