However, this diagnosis has left Jason and his family in a very difficult financial position. Jason lives in rural Eastern Kentucky deep in the Appalachians, and has to drive to Lexington every day for treatment — which is a 3-hour roundtrip drive. This long drive coupled with the aggressive treatment plan means that he can only work half days at most. Jason works for the state roadways in a very physically demanding position. In addition, his state insurance will not cover the cost of his full mouth dental extractions, and will only cover 80% of the cost of his cancer treatment. If not enough, the hospital where he is being treated requires a $225 out of pocket up-front fee for each treatment on top of what is billed to insurance. So between the drastic reduction in work income, the costs of gas/travel to and from Lexington 5 days per week for 8 weeks, and the cost of his medical needs, Jason is looking at a very expensive and difficult road ahead. Honestly at this point, we have no idea how we’re all going to make things work.
Jason is the sole provider in his family. He has a wife of 15 years, Starla, and together they have a 14-year-old daughter named Alyssa. Alyssa was born with an extremely rare congenital disorder called FOP — Fibrodysplasia Ossificans Progressiva. The disease is caused by a mutation of the gene responsible for connective tissue repair, and it causes fibrous tissue (muscles, tendons, ligaments) to be ossified (turned to bone) over time or when injured. This has caused many of Alyssa’s joints to become permanently frozen in place, and means that she can never have any type of surgery, vaccination, etc. nor risk any injury, as her body will attempt to repair the damaged tissue with more bone. There is no treatment for FOP. Alyssa struggles to complete many simple tasks due to restricted movement, and needs assistance with everything from putting on shoes and clothes to washing her hair. Her condition is progressive, and she relies on Jason not just for physical assistance and emotional support, but also as the primary family income with state-funded insurance that covers all of her doctors and special needs.
Jason is also caring full-time for his 18-month-old granddaughter McKenzie, whose mother and father are currently not able to care for her. McKenzie and Alyssa are the light of Jason’s life, and mean the world to him.
Jason is one of the most warm, funny, genuinely giving people I have ever met, and is a wonderful father and uncle. I am very blessed to call him my brother-in-law. He and my husband Shane are just 2 years apart, and have grown up as best friends from day one. They never go a day without talking to each other, even though we live in another state. Our daughter Holly absolutely adores him and lights up when he walks in the room. Jason desperately needs our help now, and I am reaching out for him as he would never ask for assistance himself. Please consider donating to Jason’s needs and/or sharing his story and this link with others. The more people we can reach, the more help we can give him! Thank you for your time!
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