4 thoughts on “Save A Limb T-shirt”

  1. I am a 25 year old man living with Fibular Hemimilia, but where my case differs from any other that I have read about my doctors chose to neither amputate or operate. I live with the use of an external extension prosthesis and find myself to be just as active as the fully able bodied priends of mine. I started playing hockey at the age of 3 and have never stopped playing sports.
    I was truly blessed when born by having Dr.Salter watch over me and be the only doc out of 10 to say “let him be” and they did. When I would visit him in his office in Toronto he used to roll my pant leg up and tell me to parade in front of his colleagues offices, he got quite the kick out of it.
    Now at the age of 25 I experience no pain, and no complications, I just switch up my prosthesis once every 4 years or so or as needed. I work 2 jobs perfectly mobile, and play softball, basketball when I can, paintball, I do Muay Thai (Thai kickboxing), and pretty much any other physical activity I can get my hands on.
    I’m not sure if I am the only one that has lived my life without the procedures or the amputation but I am here to say that neither is needed, in fact I am much happier now than I could have imagined being had things gone either of the other possible ways.

    I hope this comment can inspire those who have a child that they have not decided on what to do yet to just let their child grow as is. Fibular Hemimilia isn’t as much of a hinderance or burden as the professionals may make it out to be.

    If you have any questions please feel free to contact me. I can also provide pictures of my journey should anyone wish to view them.

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    1. I am so glad to read about how well you are doing! It sounds like your parents made the right choice for you. I imagine this choice would not be possible for everyone considering there are more issues with fh than just the length difference that may need to be addressed with surgery.

      Thanks for sharing your story!

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  2. My daughter has been diagnosed with severe type 2 FH, will have a 20CM shortage and has a 3 toed foot. Amputation is what has been recommended – but I’m very against it. I would love to hear from you as to your experience overall. Thanks

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    1. Hi Tee, not sure who you wanted to hear from. If you want to know about lengthening and such I can also suggest you check out Sinai in Baltimore’s web site where you can find information on chatting live with the Doc’s there. They can answer any of your questions. The link for the yahoo support group to the left would be helpful to in terms of getting other families perspective. Nicholas’s discrepancy would have been 8 inches at maturity. His foot looks like 2 toes but is actually 3. Overall we love Sinai but I would suggest you talk to any docs you can find who have significant experience treating fh!!! Best of luck.

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