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My name is Ella I am 17 and I am doing a two hald marathon runs to raise money for my dad. He has a genetic disease called Hereditary Spastic Paraplegia (HSP). This progressive disease that causes the muscles and tendons in his legs to weaken and spasm to the point that he will eventually be bound to a wheelchair and unable to move. This disease is incurable and irreversible. There is also a possibility it can progress and cause speech issues, further whole body weakness and be fatal.

My dad was always a very active person for as long as I can remember. As soon as I was able to walk as a child my dad always tried to involve us in sport and activities giving us ( me and my younger brother and sister) as many opportunities as he can along with my mum. My Dad used to play international cricket for his national team Ireland as a wicket keeper. As well as playing send class at Surrey cricket and first class at Sussex. Once he left international sport he became a sport teacher teaching both cricket and hockey. Things continued this way until I was around 9 when we started to see some issues with my dads balance and walking. Until he was soon diagnosed with HSP. Things didn’t quite feel real at first as I was young and didn’t really understand how this would end up and neither did my dad I think. A year or so later he had to stop teaching sport and had a change in job position he had at the school I was around 10. Then after this things gradually started deteriorating. I entered my first year of secondary school and my dad was having to use a walking aid which was a crutch to support and help is walking( and could not walk further than around 200m). This progressed until year 10 when he began to use a trolly walking aid. Till now and cannot get further than a few steps without. This has taken a large toll on my dad who I remembered as a happy, active and bright person he would always make everyone laugh. But now he is different, he’s less happy, less talkative and not interested in much, but I don’t blame him I would be too. It will not be long now until he will have to be in a wheelchair, and I cannot imagine how that would make him feel.

But there is a chance that he can be better. Not back to the way he was, but better than now and a lot happier. My family have been recently informed of a life changing surgery opportunity in the US. It is a surgery that cannot be offered here. This if preformed right would sever the nerves that cause the deteriorating. Allowing my dad to walk without an aid for relatively long distances, as well as prevent further deterioration that can be fatal. He will never be able to run again or play sport but at least he would be able to walk freely and leave the house without our assistance, to have his own freedom and live his life again. This is a very expensive surgery and only 50 people have had it costing around 70k. My father only has around a 6 month window to go this surgery as it cannot be done if he has gone in a wheelchair.

I would give up anything so that my dad could be better. And I know that I will not be able to raise that amount but any amount of money I can raise and give to my dad to put him a step closer to getting his life back I would. All I want is for him to be happy.