William Shull

Dear Friends, Family and Community,

Our son, William Shull was born with an inherited genetic condition called PMM2-CDG Type 1A. William has weak muscle tone, ataxia, spinal deformities, osteoporosis and is unable to walk and depends on a wheelchair to get around. He also suffers from seizures, blood clotting disorders, peripheral neuropathy, low blood sugar, hypothyroidism and is legally blind. William is 16 years old, but he has severe intellectual disability, functioning at the level of a three-year-old. His brain is under-developed which greatly affects his language. He has a feeding tube to receive medications. Also, when he is ill or won’t eat or drink through his mouth, we can give him liquids and PediaSure.

William is a wonderful son, grandson, brother, cousin and nephew. In spite of the many struggles that he faces, William is such a happy kid who is always smiling and laughing. He is determined, strong-willed, loves to play with his toys, shop, and play outside. He is not able to go to school because of his compromised immune system. A few years ago we moved to be closer to Children’s Hospital of Pittsburgh so that he can get the best medical care possible.

As you can imagine the expenses related to William’s medical condition are astronomical. Even with insurance there are many expenses that must be paid out of pocket. Our immediate need is a wheelchair accessible van to be able to transport William to his numerous medical appointments with specialists and therapist. He weighs almost 90 pounds and it is getting very difficult for us to transfer him from his wheelchair into the car. Other expenses that we incur are travel back and forth to the hospital in Pittsburgh, adaptive equipment, co-pays, deductibles, medications, additional therapies, and a caregiver if needed.

To help with the financial burden of William’s uninsured expenses, a fundraising campaign in his honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax deductible to the full extent allowed by law, are held by Help Hope Live in the Mid-Atlantic Catastrophic Illness Fund, and are administered by Help Hope Live for illness-related expenses only. Please consider making a contribution.

For credit card contributions, please select the “Donate Now” button or call 800.642.8399. Or:

Make checks payable to:
Help Hope Live

Note in memo section:
In honor of William Shull

Please send to:
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road, Suite 100
Radnor, PA 19087

On behalf of William, we thank you for your kindness, generosity, support and prayers.

Betty and Brian Shull
814-612-2317
[email protected]