This journey began over five years ago and through the love and support of friends and strangers (who became friends) we raised a phenomenal amount of money to save Alex’s life. He underwent life-saving treatment in Kansas City, U.S.A. after his misdiagnosis by the NHS in England. That treatment always assumed a final surgery when Alex reached skeletal maturity, but we hoped that the NHS would accept their failings and responsibility and take this on. Sadly, they have not. Alex is now in remission from his Ewing’s Sarcoma Cancer but requires surgery to remove the telescopic element of his prosthetic femur and replace it with a final adult version. Alex’s prosthetic femur can extend no further and he continues to grow. As he grows his spine and hips become more misaligned and his gait worsens. This means he is in considerable discomfort daily and despite his walking aids is in pain when travelling anything other than short distances. This will get worse and we have been told that he may in the future have to return to his wheelchair which is a devastating prospect for a young boy who fought against all odds to get out of it. As a treatment option in the U.K. the NHS have proposed burning his growth plates and pinning his healthy leg to prevent him growing any further and thus alleviate the need for him to have a new prosthesis insert: we have refused to do this!
We have consulted with Kansas University Hospital in Kansas City where he had his original surgery. The original intention was for Alex to undergo this surgery in 2024 however due to his decline and the affect it has on his everyday life they have agreed to bring this final surgery forward to 2023. They will give us a substantial discount and many healthcare professionals in Kansas City have offered to work for free to make this happen. This is why we are once again seeking the help of those who are able to contribute as his family are financially exhausted. Once he has had the surgery and had intensive rehabilitation, we hope he will lead a relatively pain free life and may walk without the need for any walking aids whatsoever.
The fundraising needs to start now and incorporates associated needs that we will encounter along the way including a new wheelchair, further aids and adaptations, prior consultations and post operative check-ups. He will also receive cancer scans as he is no longer eligible for them under the U.K. protocol. The funds needed will also cover flights, accommodation and general expenses associated with long stays away from home as well as physical therapy and osteopathy treatment to manage his problems prior to the surgery.
The link to the Go Fund Me is here: Fundraiser by Jeffrey Goodwin : Alexander’s Journey: Now to Final Surgery 2023 (gofundme.com)
The more detailed financial estimate and breakdown of costs as well further information is here.
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