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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
brian_shull2000@yahoo.com
We have had a very busy last month & a half! Last updated, William was going in for a minor surgery in Pittsburgh. Well, he ended up staying a few days in The Children's Hospital. We found out that William has clots throughout his body and does not have many places of access for a central line. William will most likely not be able to have any surgeries in the future do to this. Although this was devastating news, William is happy and he is in great spirits!
Also big news---we moved! Into a wonderful new (to us) home for William in Weedville, PA. William has transitioned very well to the move. He absolutely loves his new house, which has a big porch for him to play and also a yard! As soon as William wakes up in the morning, he gathers his toys and starts to head for the porch! He spends countless hours watching cars drive by, playing with his toys on the porch & yard, playing with his water toys in the yard, and watching his dad work in the yard. We are in the process of getting a wheelchair ramp built, which will be a great help! Thank you all again for your help, support, and kind wishes! We will update again soon.
William is going for a minor surgery this Thursday at Pittsburgh's Children's Hospital. We will update everyone on Friday as to how it goes. We would appreciate any and all prayers. Thank you!
Love you sweet pea!
Aunt Tina and Uncle Al
Love you William. Also love your family.
Aunt Lorrie
Make checks payable to:
Help Hope Live
Note in memo:
In honor of William Shull
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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