Harry's story

Our little brother Harry is 16. He didn't have the best start in life and was born very early ( at 27 weeks) weighing a teeny 1lb 9oz, however it soon became apparent that being early was not the only hurdle that Harry would have to overcome. It was soon identified that Harry had a genetic disorder. To this day it still does not have a specific name, it is incredibly rare. The main effect of the disorder is to Harry's immune system, quite simply half of it does not exist. Each week Harry has to have subcutaneous immunogloblin ( needles that go into the layer of tissue below the skin), a blood product which helps him to fight off infection, because his body will not do this for itself. In addition Harry has diabetes, and is insulin dependent, chronic lung disease and has difficulty absorbing any food. The disorder has caused Harry to have learning difficulties, and his behaviour can be very challenging.

Harry is not defined by his condition, and to us he is Harry, our little brother. He has the best sense of humour, a very comical sense about him, and loves to do impressions of those around him ( er..funny if you are not on the receiving end!!!) Harry loves films and is the best cinema companion. He is also mildly obsessed with lego, and Dr who, and these have been his passion since he was tiny. Harry attends a school for children with special needs and that is where KIDS comes in.

Why KIDS?

KIDS are a charity that work with disabled children and young people providing a whole variety of different services, and in Harry's case he has been attending KIDS afterschool clubs and holiday clubs since he started at primary school. I asked Harry if he could tell me about what he does at KIDS and what he likes most about it, to which he replied ( in a rather teenage fashion);

" We play video games and just like hanging around. The best bit about it is that we just have fun. Chris (who runs Harry's group) and some students run it, they are cool"

KIDS provide our mum and dad with vital respite from Harry, and give him the chance to have some independence, and have a great range of experiences.

KIDS has been a massive part of Harry's life, and can only continue to run if they have both charity donations and publicity. That is why we couldn't think of a better charity to support in this challenge.

Our challenge

Before entering into this we put some thought into what would be appropriately challenging and decided on the following which I hope you agree it will push us all a long way.