This is one MARATHON task in support of one INCREDIBLE man! I will be completing the Robin Hood Marathon in Nottingham on Sept 28th 2014 for my wonderful friend, Ben Veli. He's one of the
strongest people I know and after overcoming hurdles that would have left many of us defeated, he's still always got a smile on his face. I am raising money to enable Ben to get specialist braces to help him regain his full strength and coordination in his legs, following surgery to remove a large brain tumour. Hopefully in the not too distant future, Ben will be able to cross the finish line of many a race beside me!
Please take a moment to read Ben's story below, as told by his beautiful wife, Clair and please give anything you can to help me to reach this goal and get Benny back fighting fit!!
On 27th February 2013, at the age of 25, Ben’s world changed. After a couple of weeks with slightly blurred vision, Ben visited the opticians to find out that he had bilateral papilloedema, indicating that there was too much pressure in his head. Shocked from the news, Ben then drove, alone, to Hereford A&E where they confirmed his fears; he had a substantial brain tumour.
(image Left - MRI Scan Before surgery, right - after)
The severity of the problem was highlighted when only 1 out of the 18 neuro surgeons at Queen Elizabeth Hospital, Birmingham, was willing to operate to remove the tumour because it invaded the superior sagittal sinus (vein) in the brain. The possible complications led to a long, two month wait before surgery.
After many false starts, surgery was eventually confirmed and took an agonising 10 hours to complete. When Ben awoke from surgery he was met with a challenge that he never thought he’d have to face, bilateral paresis of the legs and the loss of movement in one arm. This was clearly a shock to all, including the surgeons who were not anticipating the damage that the tumour had done to Ben’s main motor strips. All of Ben’s questions and concerns remained unanswered as it was new to everyone.
The next weeks were emotionally and physically draining as Ben fought to regain movement in his arm and legs. Ben’s strength, determination and love of risk-taking enabled him to regain movement in his legs and eventually attempt to stand, aided by a frame. After 3 weeks in hospital, Ben moved to a neuro rehabilitation ward to receive intense physio and to hopefully strengthen his legs further. His tenacity and support from others enabled him to begin to walk with the help of foot splints and crutches, regaining some much desired independence.
(Still smiling after surgery, what a trooper!!)
It has been 13 months since surgery and the transformations that Ben has made is incredible, however, life still has its difficulties and daily challenges. The damage to his motor strips caused him to have ‘foot drop’, preventing him from being able to move his feet and balance independently. On a daily basis, Ben has to take risks in order to feel ‘normal’ and struggles with tasks that used to be so natural to him. He still suffers from severe neuropathic pain in his legs and receives botox injections to try to relax the muscles.
Ben’s future and recovery is still a mystery to all, as there are no quick-fix solutions, Ben is trying to find ways to help regain strength and hopefully movement in his feet. Currently, Ben uses ankle splints to help him walk, these are helpful, however, they don’t promote normal movement, which can increase spasticity and muscle pain in his legs. ‘Ottobock’ manufacture a ‘brace’ (Walk On Flex) which is more durable, lightweight and improves walking pattern, decreasing muscle pain. These are at a cost of £500 per foot which is currently unachievable for Ben due to the fact that he is unable to work. Unfortunately, these, deep sports massages and neuro physio sessions which are so crucial to Ben are unavailable on the NHS, meaning that money is now a barrier to Ben’s further recovery.
Over the next year, Ben still faces two surgeries, including having a titanium plate fitted to replace his skull (skull-less below!), and a bout of radiotherapy to blast the residual tumour.
Although Ben has had an extremely challenging and life-changing 15 months, and still faces many hurdles, he has remained upbeat and determined throughout. His positive outlook and sheer resilience has been a tonic to his family and friends who have been by his side. (Ben & Clair now below - two of the most wonderful people you could ever hope to meet)
If Ben & Clair can get through this, a marathon will be a piece of cake!! Please help me 'Beast it for Benny!!!' THANK YOU! xx
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