Miyoshi Muscular Dystrophy expenses

Hello, I was diagnosed with Miyoshi muscular dystrophy a little over a year ago.  It had taken me over a decade to get even that far after countless doctor visits and 3 neurologists. This is a progressive disease and I am trying to maintain my ability to walk for as long as possible.  With that in mind, I got fitted and received custom orthotics and leg braces.  I received them a couple weeks ago, but found out that of the...(wait for it) $2,758 total, my insurance covered a MUCH smaller amount than expected.   The total out of pocket I owe for the braces and orthotics is $1,900...yep So you're probably saying to yourself, "He's asking for $3,000, but only owes $1,900, why the difference?"  Great question!   My particular muscular dystrophy variant targets my lower body.  It makes my legs bow out significantly and I have to hunch over to walk if the braces and orthotics don't support me.  The shoes I currently use to house all that equipment are work boots made by Redwings.  The boots are pretty heavy duty and aren't ideal for a couple reasons.  First, they are heavy, meaning it takes extra leg strength just to swing them around.  Leg strength that is in short supply. Secondly, to keep my ankles and everything in the proper alignment I can't use them after they "break in" to a certain point.  Basically, I buy $150 boots every 4 months.  Any money raised past the amount to cover the braces and orthotics is going to go towards getting custom built shoes, and I expect that to be at least $500-1,000.   It's been a difficult process to manage to be honest.  In high school I was a high jumper (personal best of 5'9") and javelin thrower with basketball, baseball, bicycling, and volleyball thrown in for good measure.   I didn't even have any symptoms until I was almost 25ish.  And the progression was so slow that I didn't really give it much attention until it significantly affected my walking.  Now, I have to pull myself up stairs.  I have to use those handrails when I use the restroom.  If I need to do something at ground-level, I often need help getting back up. Please consider making a donation so I can continue to move about as well as possible for as long as possible. Thank you, Jeremy

Donations ()

  • Anonymous 
    • $500 (Offline)
    • 24 mos
  • Anonymous 
    • $500 (Offline)
    • 25 mos
  • Joan Fitzpatrick 
    • $100 
    • 25 mos
  • Anonymous 
    • $1,000 (Offline)
    • 25 mos
  • Heather Bupp 
    • $50 
    • 25 mos
See all

Organizer

Jeremy Schaale 
Organizer
Long Branch, NJ
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