I think the moment when it really dawned on me that my brother was seriously ill was the day I walked into the bathroom to find him fitting on the floor. He would have been about 15. I panicked and hid in my bedroom, leaving my mum to hold Andy in her arms and keep him safe while my stepdad called for an ambulance.
It wasn’t the first time I had seen something like this. When I was six, my dad collapsed at the top of the stairs one morning, having the same convulsions brought on by a haemorrhaging brain tumour. I came out of my bedroom to see what was going on, saw him and ran back into my room, hiding under the bedcovers!
So when it happened to Andy, I had a pretty good idea it would be the same cause – VHL or Von Hippel Lindau disease. To my shame, it’s only in recent years that I’ve really begun to get to grips with what VHL is, essentially a genetic from of cancer. But that doesn’t begin to capture the complexity of the illness, the endless hospital appointments to see different consultants specializing in the different parts of the body where tumours can develop, the countless life-saving operations, and the constant anxiety waiting for the next hurdle to present itself.
May 2017 is VHL Awareness month and you can find out much more about VHL on the VHL UK/Ireland website – http://vhl-uk-ireland.org/.
And don’t forget you can sponsor my walk to raise funds for VHL UK/Ireland at https://mydonate.bt.com/fundraisers/walk4andy.
Of course, I can’t really know what it’s like to have VHL. It wasn’t to be my illness. I knew that for sure when the DNA results came through in 1996. And it was our parents (my mum and stepdad, and my dad and stepmum), as well as Andy’s wife for the time he was married, who lived with the daily implications of loving and caring for someone with VHL – my mum in particular for every day of the 38 years of Andy’s life.