Wednesday, 28 July 2010

Here's to one amazing boy

The first time I met Joshua, he was a small boy playing with his sisters. His older brother, who happens to have Down's Syndrome, was helping his older sister, who happens to have Cornelia de Lange Syndrome to eat her lunch. His father was rebuilding the family kitchen in an attempt to create more useable living space to accommodate the needs of their growing family, his mother was hanging out endless acres of snowy white terry towelling nappies, and he and his middle sister were playing with his newest little sister.

Over the past few years I have seen that little boy grow into a superbly caring young man. A boy who quietly gets on with things, who doesn't complain (or at least not in public). A boy who has watched his mother struggle with her own medical conditions, whilst his siblings have become increasingly and worryingly unwell too. A boy who has watched his little sister deteriorate as she progresses through the various stages of Leigh's Disease. And who has seen his grandfather approaching the end of his life through cancer.

Except, of course, that isn't really true. I haven't seen Joshua watch that. Because, as that was all going on, Joshua was quietly going blind. His vision, never great, grew dramatically worse, and Joshua felt that this was minor compared to what his siblings were going through. He decided that his parents had enough worries, and he didn't make an issue of it.

It's an issue now. Joshua's school have been helpful, despite not having had much experience of a child with serious visual impairments. But now Joshua cannot see the white board. He can't read the work he is supposed to be doing. And the educational system, which has been so supportive towards his siblings' special needs, is not able to provide the equipment he needs in order to be able to access the curriculum and take his exams.

I think at this point, most of us would simply sit down and give up. But Joshua's not like that. Far from giving up, Joshua has decided to do his best to raise the money himself. The equipment Joshua needs is a Low Vision Aid, the ReadIT Scholar, ZoomText and a Rugged Laptop to use it all on. The estimated cost of all this is approximately £6,500. And Joshua is hoping to raise this by having his own sponsored bike ride. Clearly, for his own safety (and for the safety of people around him!) Joshua cannot cycle on public roads. So, during the family's two week summer holiday, he is hoping to cycle one hundred miles on dirt tracks and open countryside. Not only that, but he wants to do so whilst towing his oldest sister in a bike trailer. Not only will she really enjoy the experience herself, it will give the rest of the family a break from having to watch her every move.
Joshua really is an amazing young man. If you would like to help Joshua raise the funds he needs, you can make a donation through his mother's blog. Here you can also find sponsorship forms, if you would like them. If you are unable to help financially, then Joshua and his family would value prayers as they try to find the funds to get this equipment for Joshua.

Thanks for reading,


Anonymous said...

Thank you for the link.Found it very easy to make a paypal donation once I went onto Joshua`s blog.Good Luck to this wonderful boy.

Linda said...

I will support Joshua as his efforts are admirable but I DON"T understand why the LEA are not providing these necessary aids for him!

Anonymous said...

I have made a small donation to support Joshua as I admired his determination and get up and go attitude. All the very best in reaching the target.

pippinsmum said...

What a star Joshua is, and his Mum coping with all those problems is a megastar Mum. As my old pastor's wife used to say, she deserves a crown as big as a gasometer!


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