I was diagnosed with Von Hippel Lindau (VHL) Disease at the age of 21 in 1997, just before my final exams at UEA. As I was adopted, and the condition being hereditary, I was not pre-warned at all. On the plus side, nobody else in my family has to put up with this condition.
I have had 14 general anaesthetics since then as follows:
1997 - retinal cryotherapy leading to blindness in left eye since.
2003 - spinal laminectomy
2005 - 30% of left kidney removed due to cancer.
2010 to 2014 - 9 brain surgeries to remove 9 tumours and cysts, developed hydrocephalus so had shunt fitted but developed hospital acquired meningitis. Shunt removed, 3 weeks of external antibiotics, then shunt resited to other side.
April 2014 - 5 weeks of daily radiotherapy to stop further growth of 2 remaining brain tumours.
Jan 2015 - spinal surgery to remove 3 intra medullary tumours plus removal of lamina. Resulted in sensory paralysis below waist and down left side. Have been confined to a wheelchair since.
In the past few months I have discovered Just Ride at Garrons Park, Southend. Here I have gained access to a hand propelled bike and the athletics track. I never thought I would be able to enjoy the freedom of cycling or get some meaningful exercise. It really has been a life changer and helps me remain independent.
Through contact with Just Ride, I have discovered that there is a fantastic handbike system, an RGK wheelchair and an Atitude hybrid cycle system, that I could not only use for exercise, but it could potentially open up the roads to me, and also help with my general fitness.
I also found out, unfortunately, that the whole system would cost up to £6000, a pretty impressive figure. Being unable to work following this injury, we are trying other ways to raise funds. Whilst I hope some of you will be able to join us at Garrons Park athletics track , I have set up this crowdfunding page for those who can't make or simply want to donate. please sponsor me!!!