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.
June 29, 2016
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.
May 16, 2016
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!
July 9, 2016
Love you sweet pea!
Aunt Tina and Uncle Al
July 6, 2016
Love you William. Also love your family.