Jaxson’s Fight

I am the Aunt of a sweet and loving little chubby 2 year old  boy name Jaxson. This past Tuesday, Jaxson’s Mom went to get him out of bed and noticed that Jaxson was having a difficult time walking and crawling. He was taken to Cayuga Medical were he was diagnosed with Ataxia. Ataxia is “a lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects and other voluntary movements.”  The doctor did not feel comfortable treating Jaxson and sent him to Rochester. After many tests and scans, the neurologists found that the diagnosis was incorrect and what Jaxson actually has is called Leukodystrophy.  Leukodystrophy is a rare genetic disorder that affects the central nervous system by disrupting the growth or maintenance of the myelin sheath, which insulats the nerve cells. This is a progressive disorder, meaning that it tends to worsen throughout the life of the patients. It is likely that Jaxson will eventually lose his ability to walk. There are different forms of this disorder and until we receive blood tests back we will not what specific form it is and what our next step will be. Jaxson is going to require a lot of care which will more than likely result in my sister having to stay home to tend to him. I’m reaching out for my family to ask for help in this very tough, scary, and difficult time. Anything will help. There are going to be medical bills that aren’t covered by insurance,   bills that will need to be paid, gas for doctors appointment and the list goes on and on. I wanted to try and eliminate the financial burden as much as possible so she can focus all of her time and energy on making the best life for Jaxson. Any of your help is appreciated more then you’ll ever know. <3
  • Anonymous 
    • $100 
    • 35 mos
  • Marisa LaFalce & Family 
    • $20 
    • 35 mos
  • Heather Talmadge 
    • $35 
    • 35 mos
  • Dennis, Amy, Claire and Vivian Bubel 
    • $50 
    • 35 mos
  • Kristin Dade 
    • $100 
    • 35 mos
See all

Organizer

Amber Guernsey 
Organizer
Maybury Mills, NY
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