Weʼre raising £50,000 to support Ben who has lost his leg to cancer; and get him the best prosthetic limb in the hope he can return to hockey & university
- North Wales, UK
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 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. 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 was immediately referred to the specialist Robert Jones & Agnus Hunt hospital in Gobowen, Oswestry.
2 days later, after numerous scans, Ben was told he had a 14cm tumour. A biopsy soon 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 age of 21 Ben struggled to come to terms with this emotionally and psychologically.
Ben had 6 cycles of pre-operative chemotherapy at the wonderful Christie hospital in Manchester to try and shrink the tumour and treat any cancer cells that may have spread to other parts of his body before surgery. Now, after amputation, he has 8 more cycles of chemotherapy and possibly radiotherapy to consolidate his treatment.
The side effects of this hardcore chemotherapy are significant such as fatigue, nausea and vomiting. Ben has lost his hair, his eyebrows and most of his eyelashes; his skin is pale and sallow and he has very little energy at times; a stark contrast to the good looking young man who had an appetite for life.
Ben’s Prognosis :
Sadly, there was no hope for Ben to keep his leg and his right leg was removed half way up his thigh. The operation was performed by the amazing “Mr Cool” and his team at the specialist bone hospital, Robert Jones & Agnus Hunt, where Ben spent 2 weeks in recovery and physiotherapy.
Adjuvant chemotherapy started swiftly after surgery and he is now attending regular visits to the Limb Centre where he will have a series of prosthetics as the residual leg heals and changes shape. He will require significant mobility rehabilitation and intensive physiotherapy over the forthcoming year 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. Funding a replacement leg privately is prohibitively expensive at around £75k and will need to be replaced potentially every 3 to 5 years.
Thankfully a prosthetic leg with a microprocessor knee (MPK), using an internal computer and sensors, is now a possibility on the NHS but Ben will have to demonstrate commitment and motivation to using a mechanical leg first before being considered for this digital leg. This complex microprocessor leg provides sophisticated control enabling the user to walk with a stable and efficient gait closely resembling a natural walk.
In order for Ben to get back to competitive sport, he will require a 'blade' that allows the wearer to run and jump and overcome some of the deficiencies in other prosthetics but is not available on the NHS over the age of 18. The cost to acquire this privately is around £50k for an above knee amputee.
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 wasn't an option but we still have Ben and for that we are extremely grateful.
We’ve been through all the emotions, the anger and frustration but now we’re moving forward. Ben is still Ben and has shown amazing positivity. He's enjoying online gaming with his mates when he’s recovered from the effects of chemotherapy, and will hopefully get to finish university if not this year then hopefully the next. 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's 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 also 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.
You can view photos of Ben and his progress on Facebook: 'Support Ben Rawson'
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Jun 23, 2018
Ultra Challenge. Fantastic effort Kay. Love Mumx
Jun 20, 2018
Good luck with the challenge and best wishes to BenCharles and Janet Lloyd
Jun 19, 2018
Good luck Kay for running and Ben you are an inspiration.Jane and Roger Steare
Jun 18, 2018
Ultra challenge - Good luck Kay and Best Wishes to Ben. Love Jill
Jun 15, 2018
Good luck Kay, that's quite a challenge! Best wishes to Ben too x
Jun 11, 2018
Chris and Christine Featherstone
Jun 11, 2018
We recently attended the "Feed my Soul" event in Cefn, organised by some friends. We sold some decorative bottle lights and we'd like to donate to proceeds of this to your crowd funding page.