Lexi Herbert
A Life for Lewis Appeal - 5k Black Light Run
Fundraising for Tree of Hope
Story
Emma, Rhiannon, and I are doing the The 5K Black Light Run (Northampton) on the 7th March 2015 to raise money for the "A Life for Lewis Appeal".
Lewis was born in November 2002. He was diagnosed with West Syndrome at 3 months of age.
This has since developed into a condition called Lennox Gastaut Syndrome (LGS). LGS is a rare and extremely severe form of epilepsy with multiple seizure types. It causes severe global developmental delay.
He can have 100’s of different seizures every day and his condition is resistant to any medication or therapies which have been tried.
He is severely disabled and unable to do anything for himself. He relies on us for all his personal care needs. He requires 24hr care on a daily basis and we have both had to give up work to look after him.
He cannot walk or talk, but's enjoys being out of his wheelchair and wriggling about (in his own unique style) on his soft mats.
He absolutely loves multi-sensory environments with lots of lights and sounds (but they must be well padded so he doesn't hurt himself!).
I am trying to raise money for a purpose built multi-sensory room at home for him with lights/bubble tubes/mirrors etc. He absolutely loves the sensory room at his special needs school and at the JR Oxford hospital. These environments make him feel happy, content, and relaxed. He also loves listening to music, especially Beyonce!.
The impact a multi-sensory room at home would have on Lewis is immeasurable!.
I really hope you are able to sponsor us and contribute towards making an extremely special boy's dream come true. By sponsoring us you are donating directly towards the " A life for Lewis Appeal " .
Thanks a lot Lexi, Emma, and Rhiannon x x x
For info on what's involved in the black light run please visit;
For more details about Lewis and his dream please visit;
http://lexiherbert.wix.com/alifeforlewisappeal
To donate text LERR99 £ (your amount) to 70070
Donations by Cheque
Cheques
Should be payable to the "Tree of Hope". But please make sure that Lewis Herbert (A life for Lewis appeal) is written on the back of your cheque and send it by special delivery to:
Tree of Hope, 43a Little Mount Sion, Royal Tunbridge Wells, Kent, TN1 1YP
or to; Gary and Lexi Herbert, 5 St Benedicts Mount, West Hunsbury, Northampton, NN4 9XN.