Weʼre raising £50,000 to support Ben who will shortly lose his leg to cancer, and get him the best prosthetic limb in the hope he can return to hockey & university
- North Wales, UK
- Health and medical
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.
Travelling home from hockey one day Ben felt a lump whilst rubbing behind his knee. Several weeks later the lump turned to pain which prompted him to make an appointment with his doctor, and a common Bakers cyst was diagnosed.
Satisfied with the diagnosis after Googling his symptoms, he then waited 7 months for an appointment with the Orthopaedics team at Glan Clwyd. During this time, he continued to play hockey every week, going the whole season unbeaten! Sadly, the hospital visit revealed the small lump at the back of his knee was actually a tumour and we were immediately referred to the specialist Agnus Hunt hospital, known locally as ‘Gobowen’ in Oswestry.
2 days later, after numerous scans, Ben was told he had a 14cm tumour. A biopsy later confirmed this to be a rare bone cancer called Ewing’s Sarcoma, affecting fewer than 30 teenagers and young adults in the UK each year. From the outset we were told the prognosis was not good as the tumour had wrapped around his crucial arteries and to save his life, and give him the best chance possible, there was no alternative but to amputate his leg. At the youthful age of 21, Ben has struggled to come to terms with this emotionally and psychologically.
Treatment so far :
Ben has almost completed 6 cycles of pre-operative chemotherapy before surgery can take place. He has lost his hair, his eyebrows and most of his eyelashes; his skin is pale and sallow and he has very little energy; a stark contrast to the good looking young man who had an appetite for life.
The side effects of this hard-core chemotherapy are significant with Ben suffering fatigue, nausea and vomiting.
Ben’s Prognosis :
Sadly, there is no hope for Ben to keep his leg and his right leg will be removed half way up the thigh shortly after his pre-op chemotherapy is complete. The operation will be performed by the amazing “Mr Cool” and his team at the specialist bone hospital, Gobowen, where Ben will spend 2 weeks in recovery and physiotherapy. This will then be followed by another 8 cycles of chemotherapy at the wonderful Christie Hospital in Manchester, plus radiotherapy to consolidate his treatment. We can't praise these two hospitals enough!
Post-operatively Ben will require significant mobility rehabilitation and an intensive physiotherapy plan and is likely to have significantly impaired mobility for the rest of his life.
The Cost :
Thankfully prosthetics are improving all the time but whilst lots of innovation and development has been seen in replacement limbs for the Armed Forces, the same level of functionality and prosthetics are not available to civilians on the NHS.
The option of funding the replacement leg through the private system is prohibitively expensive at around £75k, especially as it must be replaced every 3 to 5 years.
However, a microprocessor controlled leg using an internal computer and sensors, and benefitting from a knee and ankle joint (known as the 'C' leg), is fortunately now a possibility on the NHS but only after a 12 month wait; there aren’t any shortcuts unfortunately. Ben will have to demonstrate commitment and motivation to using a much heavier, mechanical leg first before being considered for this digital leg which costs the NHS upwards of £35k.
A blade, allowing the wearer to run and jump and overcome some of the deficiencies in other prosthetics, is not available on the NHS and part funding NHS treatment is not allowed. However, this is an option privately at a cost of around £50k but we will wait to see how much functionality Ben gets from his new ‘C’ leg first.
The future :
Whilst this news has been shocking and difficult for us all to come to terms with, the combination of chemotherapy and amputation is aimed at cure. In the words of Mr Cool at our initial consultation, "1st we save Ben, 2nd we save the leg". Sadly the latter isn't an option but if we still have Ben, then we're extremely grateful.
We’ve been through all the emotions, the anger and frustration but now we’re moving forward. Ben is still Ben, enjoying online gaming with his mates when he’s recovered from the effects of chemotherapy, and will hopefully get to finish university next year. He has youth and determination on his side and we don’t doubt for one minute that he will master walking again quickly and get back to sport, taking back control of his life as soon as it is physically possible.
Fundraising Appeal :
Our focus now is on securing the best replacement leg possible to get Ben back to an active life, to hopefully return to competitive hockey and importantly continue with his studies at university, as well as financing any other costs that would help improve his situation and lift his spirits.
Cancer is expensive, especially with travel and accommodation for treatment away from home. Disability too is expensive: car conversions to a left foot drive; driving lessons for an adapted car and adaptions to the home are just some of the many costs we will face in the coming years.
Prosthetics technology is advancing all the time so who knows what could be available in the future that could improve the quality of Ben’s day to day life.
So this is where you come in. If you can afford a small donation or are looking to raise money for a good cause please would you consider Ben, or at least in part. For those of you who know Ben personally, you will know what a fun loving person he his and a joy to be around. I'm sure you will agree he is a very worthy cause.
Thank you for taking the time to read our story. Just goes to show how fragile life can be.
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Nov 22, 2017
Your plight has reached the Peak District - Buxton Hockey Club... all the best for the future! Janelle
Nov 22, 2017
Nov 22, 2017
Wishing you a speedy recovery, Captain Rawson! Just keep thinking of the familiar sight of you mastering a fluke on the blue and you'll get there! All the best buddy ❤
Nov 22, 2017
Best wishes to you Ben for a speedy recovery and we look forward to reading about your return to hockey #hockeyfamily #staystrong
Nov 22, 2017
Best wishes for a wonderful future x
Nov 22, 2017
All the best! So brave x
Nov 21, 2017