Jason beats Chiari Malformation

 My husband Jeff and I have been asked by many people to set up a GoFundMe account so they could help Jason and our family. After many requests we decided to let our guard down and accept help during this time. Our son Jason Shoen who is 13 years old has Chiari Malformation. Jason started to have really bad debilitating headaches about 2 years ago. We then started our trips to the doctors. He did blood work that came back fine. The doctors said he had dairy allergies. Off we went pulling all dairy and still the headaches continued.  At this point Jason had no energy each day. He could sleep all night and get up and be tired all day long. A 12 hour night of sleep could still leave him tired and laying on the floor all day. The doctors said egg allergy and thought he had chronic fatigue syndrome. Jason's lack of energy was to the point that even on vacation to see family in New York he laid on the concrete as his cousins played basketball around him. In September 2015 Jason had an accident where he choked on a gumball and we almost lost him. He wound up going by ambulance to the hospital with a very low blood oxygen level but he made it. After this we really noticed him becoming weaker and just seeing a difference in him. His voice became very mumbled and his speech was slurred. This botheredJason a lot and kids started picking on him in school about it and still do to this day. Recently Jeff( his dad) was playing basketball with him like they had done 1,000 times before and Jeff realized his hands were curled and his mobility on his one side was very weak. Things physically he could do before he couldn't do now. Jeff demanded the docotors find out what was  wrong with Jason and he wasn't taking no for an answer. Jason did more blood work, EEG, and MRI's. Right away with the MRI they found out Jason has Chiari Malformation and he is at the point where it is debilitating. Headaches, loss of energy, loosing the ability to swallow, slurred speach, and loosing his physical mobility are all symptoms of Chiari malformation. Jason will be having decompression surgery in 2-3 weeks. This is a brain and spine surgery to stop him from getting any worse. He has to be in ICU for 2-3 days after surgery and 2-3 more in the hospital. Then he has a long road of recovery at home and physical therapy. Jason has a lot of love surrounding him and a lot of faith in him. I know he will beat Chiari Malformation and live a long good life ahead. Thank you to all who help us along the way. With time off of work, medical bills, travel expenses back and forth to Hershey, and making sure his surroundings at home are comfortable for him for his recovery. We greatly appreciate all your love and support! Thank you!

Donations

  • Dave & Denise Fruhwirth 
    • $100 
    • 49 mos
  • Jude&jonah Chirico 
    • $50 
    • 49 mos
  • Brenda Whitney 
    • $25 
    • 49 mos
  • Angela Marquis  
    • $25 
    • 49 mos
  • Jason and Jessica Castro 
    • $100 
    • 49 mos
See all

Organizer

Melissa Jeff Shoen 
Organizer
Mechanicsburg, PA
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