Dustin's corrective surgery for CMT feet

Hello Everyone.  My nephew Dustin Cambria is 19 years old and has a condition of inherited peripheral neuropathy called Charcot Marie Tooth Disease.  It causes the nerves in the limbs to degenerate which then causes muscles to atrophy and waste which then leads to weakness and deformities in the feet and hands.   The type that runs in our family is CMT 1x which can be mild, moderate or severe, and it has no cure.  It is typically severe in the males of the family and it ravaged my father (his grandfather) who is now wheelchair bound with severe mobility, muscle wasting, circulatory and nerve impairments.   Dustin has shown symptoms of CMT since he was a small boy and faces a future of progressive muscle atrophy in his feet, legs, hands, and arms.  We have recently consulted with the top surgeon for CMT corrective surgery in the United States, Dr. Glenn Pfeffer. Having surgery on both feet will correct Dustin's walking and take the pain and strain off of his hips, knees, and back, which are beginning to be affected.   It will also stabilize his ankles and prevent so many of the falls and injuries that come with having this terrible disease.  It is an extensive surgery on ligaments, tendons, and bones and will require 6 weeks non-weight bearing per leg. With this surgery, Dustin will gain near-normal gait and motion, stability and balance, with a much improved quality of life and less deterioration. We are so excited for his future! Luckily, this doctor and hospital accept Dustin's current medical insurance, so thankfully that part is covered.  However, Dustin and his grandparents must travel to Los Angeles at Cedars Sinai Hospital for 2 surgeries.  He will make 2 trips out there, having to stay in a hotel 3 weeks each trip, rent a car for 3 weeks each trip, and fly round trip with his grandparents for each trip.  The first surgery is scheduled for January 13, 2021, with the 2nd surgery happening 8 weeks later.  We estimate that each trip will cost 5000 dollars for the family, for a total of 10,000 dollars, which does not include the medical deductible of 2800.  We are pulling together to support the members of our family who are traveling with him and bearing the brunt of these costs, yet it is a very heavy financial burden.  We are asking anyone who feels they would like to support the family for this very important cause, to donate with a grateful heart and join us in celebrating the good news that Dustin's condition doesn't have to drag him down! If you cannot donate, we ask for your prayers for smooth and uneventful travel and surgery with the best outcome possible. Thank you so much from all of our family for supporting us in any way possible! Blessings to you and yours! 
P.S. photo on green carpet is Dustin's feet.  Bottom photo shows a corrected foot next to a CMT foot.53228538_1607734786326289_r.jpeg53228538_1607734817781015_r.jpeg

Donations

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  • Anonymous 
    • $50 
    • 9 d
  • Irene Hoffmann 
    • $50 
    • 9 d
  • Reagan Dixon 
    • $20 
    • 10 d
  • Melinda Fleck 
    • $100 
    • 10 d
  • Ashley Helsel 
    • $50 
    • 24 d
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Organizer

Ashley Cambria Vallee 
Organizer
Osceola Mills, PA
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