Running for VHL
In 2011 my big sister Jo will turn 40. To mark this occasion most people throw a party, put pictures around of when they were oh so much younger, but not my sister; she is going to attempt to run but definitely complete the 2011 Virgin London Marathon. Why? Because we are a family who know the effects of VHL and through the Silver Bond scheme (see Note 1) she can enter this event and raise money directly for VHL.
- UK donations are best through this site
http://www.justgiving.com/Chloe-Doherty
- US donors please donate through
http://www.firstgiving.com/jorunning
Our family’s story isn’t so different from others. If you’d like to know a bit of background, read on.
My father’s mother died of a brain tumour in the days before MRI. He was 5 years old. The autopsy found Pheos too.
Back then in the 1950’s this didn’t mean much to the hospital that did the autopsy. Nobody knew that Dad had the gene, and at the age of 9 he had exploratory surgery to find out why he kept collapsing. They found a pheo the size of a grapefruit. They just opened him up and took it out -- no beta blockers or anything -- and believe it or not he was fine.**
As a young and now married man with three children, he experienced some very nasty headaches and had the scan that wasn’t available to his mother. It revealed a brain tumour in the cerebellum. It was after this surgery that someone thought, “Hang on, this is all adding up to VHL.” So as a child we grew up with eye tests and in the 1990’s we had genetic tests called “linkage analysis” to determine whether we were at high risk or low risk for VHL. This was an early predictive test, not as accurate as today’s DNA tests.
Chloe (left) and Jo (right) |
My brother Conrad and I were high risk and Con had his first and only operation to remove a pheo when he was 22. Something went wrong, no one knows quite what, but a day after his operation his brain began to swell and it crushed inside his skull, his heart decided to end it but the doctors started it again, twice, leaving him physically alive but, as we were told 2 days later, brain dead. We switched off the machines, my mother held his hand till his strong (and much wiser than the doctors) heart stopped.
A year later following my annual ultra sound we found out I also had my first Pheo. I was very frightened and so was everyone else, including the medical team who made it clear that they couldn’t be sure the same thing that happened to my brother would happen to me. It didn’t, so here I am now.
Over the years my father and I have had several procedures and operations, including most recently the gamma knife. No one has been able to count the number of small lesions and tumours Dad has in his brain but he has become very disabled over the past 3 years. I can count mine: 2 spinal tumours, one on the optic nerve and a hole in the macula as a result, and something -- not quite a tumour yet -- in my kidney. My big sister has been there every step, always ready at the end of the hospital bed or the end of the phone with whatever I’ve needed, and now she’s running for me too. For all of us.
Please support my sister’s efforts and help to find a cure for VHL!
Editor’s note: Today drugs are given for several days or a week prior to the surgery to block the effects of the pheo. It is important to follow the instructions of your physician and take these drugs to prevent a possibly life-threatening situation during or following this surgery.
Note 1: As a fundraising event, there is no race in the world that comes close to the London Marathon. More than three quarters of competitors now run for a good cause and a third of all entry places are offered by charitable organisations. Charities with “gold bonds” are guaranteed five running places each year. “Silver bond” charities are guaranteed one slot every five years.
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