This is Sean Bowler. Sean is a twenty-seven year old young man. Sean loves his family and friends. Sean lives with his mom, dad, sisters (Abby and Kelsey), Nana, and our puppies. He loves his sleepover trips to Gramma and Grampa Bob’s house and his afternoons with Uncle Bill and Aunt Sharon. Unconditional love is how Sean shows his appreciation for those that care for him every day.
During his younger years, we were trying to find a diagnosis for Sean in hopes of better understanding his needs, development, and challenges. In the spring of 2016, Sean was diagnosed with Xia-Gibbs syndrome through genetic testing. At the time of his diagnosis, Sean was the fifth person with a confirmed diagnosed through genetic testing and the twentieth person overall.
For the past five years, Sean has been involved with Coastal Connections in Amesbury, Massachusetts. Coastal Connections is an educational and vocational day program for adults with special needs. Sean has created many special bonds with his peers and staff members at Coastal. Right now, he is missing them very much.
On January 5, 2023, Sean suffered a fall at home. In this fall, Sean fractured his T1 vertebra. Sean also damaged the orthopedic hardware that had previously been installed to fuse his spine due to kyphosis and scoliosis. More troubling is that this fracture caused a blood clot to form along the spinal cord, causing a C5 Spinal Injury. Sean just recently transferred from the ICU at Children’s Hospital in Boston to Spaulding Rehabilitation Hospital across the city in Charlestown. With very aggressive treatment and a lot of work on Sean’s part, he is still looking at 8 – 12 weeks of rehabilitation and recovery at Spaulding.
Sean’s future needs are uncertain. Although, there are some things that we know he will need. These include a new wheelchair, home modifications, and a reliable wheelchair van. Two of those three items are not covered by insurance. People have already shown more love and support than we could have ever asked for. We appreciate all that has been done for Sean and will do everything we can to make sure he lives his life as close to what he is used to, as possible.
It has been a privilege to be part of the Paper Clouds family. We are honored to be part of this final campaign. The many good deeds by PCA could never have been accomplished without Robert Thornton. The Bowler Family will always be grateful for what Robert has done for adults, and families of adults, with special needs.
Feel free to follow Sean at https://www.facebook.com/Theboysmb/
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