Sebastian’s Wheelchair Fund

Sebastian is twenty-one and enjoys the arts and interacting with people. He is very creative and expresses himself through a variety of art forms including drawing, writing, and performing. He loves to sing and make people happy. Sebastian was born with Spina Bifida, Arnold Chiari Malformation, Syringomeylia, Scoliosis, and Hydrocephalus. He also has a seizure disorder and some delays due to numerous brain surgeries. In his short life, Sebastian has had over sixty surgeries including a cranial vault reconstruction, two laminectomies, a sub-temporal decompression, spinal cord untethering, orthopedic corrections, spinal fusion, multiple shunt revisions, and other procedures. Sebastian is in dire need of medical equipment and living adaptations so he can learn to become independent. Presently, we are living in a rental property where he is unable to access the bathroom, kitchen, or bedrooms due to his lack of adaptive equipment. Sebastian, who is paraplegic, needs special medical equipment so he can learn to perform the daily living tasks most of us take for granted. He has outgrown his custom wheelchair because in spite of his 2009 spinal fusion, his spine is still curving. In fact, it has become so uncomfortable for him to sit in his chair that sadly most days he elects to stay in bed. He is also becoming too grown to lift in and out of the bed without the right equipment.
We are trying to raise money to buy Sebastian a custom manual wheelchair, a Hoyer lift, and a new fully automatic hospital bed with safety and traction bars (Sebastian cannot roll over or sit up without assistance and he would like to learn to do so). If we are fortunate enough to meet our goal, some of the funds will be used to purchase him a custom bath chair on wheels and bathroom adaptations so he can get into the bathroom to get a shower (for the past eight years he has only gotten bed baths). His physician suggested we start a fund so we thought we would give it a try. Without some type of a miracle, there is no way we can buy him the equipment he needs so he can have the dignity he deserves as a young man.
Sebastian would like to be an actor, singer, and artist when he grows up. We are all very proud of him!