Alexander's Journey: Now to Final Treatments 2023

This journey began over five years ago and through the love and support of friends & 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 action to mitigate the disparity between his continuing growth in his healthy leg and the prosthetic femur which cannot be extended any further. 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 any other treatment: 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 academic exams scheduled in 2024 and the effect 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 treatment 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.

We travelled to Kansas City in March 2023 anticipating pre-operation checks and plans for a final conclusive surgery. Surprisingly the hospital has decided that it will be too risky to undertake the planned surgery due to the real likelihood of permanent nerve damage and complications and risks associated with a significant amount of scar tissue from the previous two surgeries.

The scar tissue has always been obstructive in extending his prosthesis but the intensive work and treatment has broken down the scar tissue to a point where we have managed to get every centimetre of extension from it. Only now is it beyond any further extension?

What has been proposed is several smaller less invasive procedures combined with radical physiotherapy and Chiropractic treatment that will reduce scar tissue and significantly assist in strength, mobility and flexibility. This will be combined with Orthotics. The Hospital has also suggested we undertake an annual oncology check for the next 10 years.

This fundraising incorporates also the associated needs that we will encounter along the way including further aids and adaptations, prior consultations and post-procedure checkups. 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 assist him.

The procedures planned for the remainder of this year are two further visits to the United States and to the Czech Republic. This will include botox procedures, Hi-Intensity Focussed Ultrasound (HIFU) and Electro stimulation.

The prosthesis itself is likely to need replacing in thirty or forty years and we plan on investing some of these funds into a high-interest account to help manage that in the future.

Once the treatments are concluded this year we will post our financial statement and confirm where the remaining funds are being deposited after transferring and closing our Go Fund Me Accounts.

The total cost we have estimated is £180,000 GBP. We have separated that amount into two Fundraisers (one here in the U.K. managed by us and one in the U.S. managed by our friends Nancy & Charity) as many of our supporters are in the U.S. and that will avoid large currency exchange and administrative fees for them. The U.K. fundraiser stands at £120,000 GBP and the U.S. Fundraiser at $75,000 USD (approximately £60,000 GBP). 

A fundraising page relating to this Go Fund Me is on our website (www.alexanders-journey.com) and will provide a detailed breakdown will appear on the website when this is all sorted. We will also obviously use his social media sites on Twitter, Facebook and Instagram, as usual, to ensure his supporters are up to date on his predicament and progress. Alex is a force for good in this world and it is a better place for him being in it.

Dum Spiro Spero.

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