Sharon Pascoe
In Memory of Ryan James Hughes
Fundraising for Claire House Children's Hospice
Story
Thanks for taking the time to visit my JustGiving page.
In loving memory of my son Ryan James Hughes
23/01/2009 - 21/05/2015
When Ryan was born I thought I was blessed with the quietest baby in the hospital - but there was a reason for that. Ryan was diagnosed with Ohtahara Syndrome. He was severely epileptic, with significant brain damage. You can learn more about the syndrome here -https://www.epilepsy.org.uk/info/syndromes/ohtahara-syndrome
We were told that he wouldn't see his first birthday, yet we had six and a half years with him. Two years ago after a prolonged period on Life Support we brought him to Claire House to make some memories. His life support was removed, but he defied doctors, and lived another two years. For this we are very grateful.
We would like to thank all the wonderful staff at Claire House. Their support has been truly outstanding, both two years ago and more recently. Before I had Ryan, my perception of Claire House was that it was a sad place. But it needs to be experienced to be truly appreciated. Even now, the support still continues, and I still see the hospice as a positive place.
It costs Claire House over £6500 per day to run the hospice and keep the doors open. They receive very little government funding. I would like to raise £6500 in memory of Ryan to support the work of the hospice that means so much to us as a family.
Anything you can donate would be very gratefully received, this is a fantastic cause and a great tribute to Ryan.
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