The Jaimison and Jaxon Hall Epilepsy treatment fund

13 months ago my family was blessed with the birth of identical twin boys. As a first time parent not knowing what to expect my world was turned upside down when they were diagnosed with epilepsy at 3 weeks old. Since then we have tried 6 anti-convulsants and numerous cocktails with no long term progress. After months and months of testing we finally found the cause of their epilepsy. It is due to a genetic mutation in their SCN-8A gene which is a sodium channel. There are several cases with this , but their variation is the first they have seen. With that in mind we have never been given a prognosis and taken things one day at a time. This past week they had a really bad string of seizures that forced us to take action. With our Dr's out of ideas and us rendered helpless we needed to make a drastic move for their long term health. We decided to ask for transfer to Boston Childrens Hospital, and it is in the process of happening. We want to give our all in making sure they get the best care possible and in order to do so it will require a ton of travel, expenses, and missed time at work. With all of these expenses and lost wages we need your help! These boys have changed our lives and the lives of every person that has been in their presence. Their smiles will infect a room and even after all they have been through they still shine through. We ask everyone to help in any way they can. We are also using funds and taking donations for a fundraiser scheduled for July 26th! I will keep everyone posted and appreciate you taking your time out to support our little soldiers!

 

  • Matthew Vitallo 
    • $50 
    • 84 mos
  • Jamie and Pat Bernard 
    • $30 
    • 84 mos
  • Lynda Maurer 
    • $20 
    • 84 mos
  • Krista Roy 
    • $5 
    • 84 mos
  • Anonymous 
    • $80 
    • 84 mos
See all

Organizer

Ryan Jaimison-Jaxon Hall 
Organizer
Rensselaer, NY
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