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Gary Herbert

Life For Lewis Charity Golf Day 2018

Life for Lewis Charity Golf Day 2018 for Tree of Hope because Lewis Herbert requires various disability items

£7,198.00
raised by 34 supporters
Donate
  • Event: Lewis Herbert 2 Appeal, 30 Nov 2020

Tree of Hope

We offer hope to families to transform the lives of sick children

Charity Registration No. 1149254 In Scotland SC042611

Story

Life for Lewis Charity Golf Day, Friday 12th October 2018 at Kettering Golf Club.  

27 holes. 9 in the morning and 18 in the afternoon. Bacon rolls and coffee on arrival. Ham, Egg & Chips for lunch and 2 course carvery in the evening. Prizes for best team and individual scores, longest drive and nearest the pin. Auction and Raffle as well.


RAISING MONEY FOR VARIOUS DISABILITY SPECIFIC ITEMS, EQUIPMENT, AND HOME ADAPTATIONS/ALTERATIONS 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. 


I'm currently trying to raise funds for the following;

New Loft Space Conversion in my house to allow storage of my vast amount of medical supplies, continence products and numerous disability equipment.  This loft space conversion will allow the necessary space for a single bed to be situated in my downstairs bedroom so that my seizures can be monitored safely overnight by my parents and carers.  This will allow my mum and dad and/or carers to be close to me overnight to provide oxygen and VNS therapy, as well as looking after me and making sure I'm safe whilst having seizures, this could potentially be life saving for me, as I'm at risk of SUDEP (Sudden Unexpected Death in Epilepsy) http://sudep.org/.  It is currently not possible for my Mum, Dad, or Carers to be close to me overnight as my bedroom is small and due to the vast amount of medical  supplies, continence products and disability specific equipment, there just isn't enough room for a single bed in my bedroom.  Having this additional storage space in our loft will allow space for a single bed in my downstairs bedroom for my mum, dad or carers to safely provide vital overnight care and therapy during and after my seizures, and this will allow me to be able to be looked after at home.   

House Adaptations/alterations - Any items and works required to help me safely access the downstairs of my house in my wheelchair as I'm getting bigger and so is my wheelchair!.  Also any necessary adaptations/alterations required in my house, to allow my Mum and Dad and carers to continue to look after me at home due to my complex condition and severe seizures. 

New Wheelchair Accessible Front Door with Low Threshold and suitable fixed ramp to allow safe access to and from my house as my Wheelchair has got bigger as I'm growing!.

SAT's monitoring machine and accessories  (SpectrO2 30 - WW1030 Handheld Pulse Oximeter with Alarms) so that my Mum and Dad and Carers can keep a close eye on my oxygen levels and pulse during and after seizures.   

New replacement floor mats for my sensory room as they have worn and will need replacing soon as it's becoming more and more difficult for my mum and dad, and carers to safely walk on them to provide me with all my care needs.   

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.   

Much Love,

Lewis x

For more details about me and the "Life for Lewis Appeal" please visit my brand new website!

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