RAISING MONEY FOR VARIOUS DISABILITY SPECIFIC ITEMS AND EQUIPMENT WHICH ARE NOT AVAILABLE TO ME UNDER STANDARD NHS PROVISION
(Words from Mum and Dad explaining my condition etc)
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 disability specific items and equipment which are not 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.
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
Eye gaze communication system - Including look to learn and Sensory Eye FX software (Includes an all-in-one PC, screen, USB eye tracker, and mounting trolley on wheels) = £4000.00 approx cost
(Target achieved and item supplied)
Items Currently raising funds for;
A deposit for a suitable wheelchair accessible and fully adapted Motability vehicle = £12,000.00 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 specially converted to my extremely complex needs. This will allow me to get out and about with my family, and will allow my Mummy and Daddy to take me to and from my special school in comfort without increasing the likelihood of me having seizures whilst in the vehicle.
I would be so very grateful if you were able to donate any amount to help me try and reach my targets and dreams, and to help improve my quality of life on a ongoing basis.
For more details about me and the "Life for Lewis Appeal" please visit my brand new website!
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, Salford House, Salford Terrace, 19-21 Quarry Hill Road, Tonbridge, TN9 2RN.
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.