Nick H Bain
Lewis Herbert 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.
During 2015 we raised enough money for my dream of a wheelchair accessible/sensory garden at home. Thank you so much to each and everyone of you who donated towards my new garden it's absolutely amazing, and I can now access my garden in my wheelchair and spend quality time together with my Mummy, Daddy, sister and brother all together in our back garden, something which I have never been able to do. Full details about the garden are below;
My Mummy and Daddy have decided to continue fundraising for me as unfortunately due to my complex disability I am always going to need various items and equipment which isn't available to me through standard NHS provision. The majority of the items are a necessity due to my extremely complex disability and condition.
Please find below items which we have already raised the funds for and which are already making a huge difference to my quality of life.
Wheelchair Accessible/Sensory Garden (Target achieved and item supplied) Approx cost = £24,000,00
New suitable manual Chunc wheelchair (Target achieved and item supplied - Approx cost = £5000,00
New suitable seat for my Mustang electric wheelchair (Target achieved and item supplied) - Approx cost = £1000,00
A suitable ipad with mounting wheelchair arm/s and sensory/cause and effect applications - (Target achieved and item supplied)
Approx cost = £1100.00
Items Currently raising funds for;
A deposit for a suitable wheelchair accessible and fully adapted Motability vehicle = £12,000.00 approx cost
Eye gaze communication system - including look to learn and Sensory Eye FX software (Includes a laptop, screen and mounting trolley on wheels) = £4000.00 approx cost
We are currently trying to raise funds for a deposit for a suitable wheelchair accessible Motability vehicle which will be fully adapted and converted to Lewis' complex needs. We are also trying to raise money for an Eye gaze communication system for Lewis to use at home. This would enable him to activate sensory cause and effect software using his eyes, with the long term aim of him being able to communicate basic words and his needs to us by selecting symbols with his eyes on the screen.
I would be so very grateful if you were able to donate any amount to help me try and reach my targets and dreams.
For more details about me and my dreams please visit;
To donate text SENG50 £ (your amount) to 70070
Donations by Cheque
Should be payable to the "Tree of Hope". But please make sure that Lewis Herbert (Life for Lewis Campaign 2) 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
Bank Details: (For Bank Transfers - Please make sure you put donation for Lewis Herbert 2) if you decide to donate to him this way. Thanks.
A/C Name: Tree of Hope, Branch: HSBC Bexhill on Sea, Sort Code: 40 10 14, A/C Number: 31498045
Should we exceed the target amount (or if we do not raise enough funds, or if they cannot be used for any other reason) the funds raised will go to the general funds of Tree of Hope to assist other sick children.