Life for Lewis Appeal

Raising money for various disability specific items and equipment

52 marathons in 52 weeks for my 18th year.

Oct 2019-20 - Marathon Year: 52 marathons in 52 weeks for my 18th year - CHALLENGE SUSPENDED

After a lot of thinking and deliberation I have reluctantly decided to put on hold my challenge of running 52 marathons in 52 weeks for Lewis with immediate effect. We are all in unprecedented times and it is unrealistic and not feasible for me to be able to go out for 4 hours plus running at a time at this current time

It is very likely that Lewis won’t return to school until September and with Oscar and Kira both being off school for the foreseeable future as well, and us having to do their home schooling on top of everything else we have to do, then there is simply not enough time to fit it in at the moment.

We have also decided to not have any of Lewis’ wonderful carers in at this point in time and for the foreseeable future due to the virus, so we will be having to do everything for Lewis on our own 24-7 which is going to be extremely testing and demanding for us, but it is the right thing to do in the current climate.
Oct 2019-20 - 52 Marathons in 52 Weeks. Full Statement more details

Marathon Running: 52 marathons in 52 weeks

Welcome To Lewis' Website

Life for Lewis Appeal

Hi, my name is Lewis Herbert

Thank you so much for visiting my site.

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 Mum, Dad, sister and brother all together in our back garden, something which I have never been able to do. Full details about the sensory garden can be found in the fundraising projects section of the website.

My Mum and Dad 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 and statutory services. The majority of the items are a necessity due to my extremely complex disability and condition.

Current Fundraising Projects: Items we are currently raising funds for..

  • New Loft Space Conversion in my house to allow storage of my vast amount of medical supplies, continence products and numerous disability specific equipment.. more details
  • 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!.. more details
  • New Wheelchair Accessible Front Door with Low Threshold and suitable fixed ramp to allow safe access to and from my house.. more details
  • New replacement floor mats for my sensory room as they have worn and will need replacing.. more details
  • New Specially Adapted Manual Wheelchair. As I’m growing and my scoliosis/curvature of the spine is deteriorating my existing wheelchair is no longer suitable for my needs.. more details
  • SAT's monitoring machine and accessories (SpectrO2 30 - WW1030 Handheld Pulse Oximeter with Alarms).. more details

Raising money for various disability specific items and equipment Life for Lewis Appeal

For full details of these fundraising project please click here

November 2018 Update..
We are in touching distance of having enough funds to have a new loft space conversion which would allow storage of all of Lewis’ vast amount of medical supplies, continence products and disability specific equipment etc. This loft space conversion would allow the necessary space for a single bed to be situated in Lewis’ downstairs bedroom for us and his carers so that we can monitor his seizures safely overnight and provide him with all the complex care he needs overnight (Oxygen and VNS therapy etc). As he is getting older being able to be with him overnight in his room is now vital and it will allow us to be able to carry on looking after him at home for as long as possible.

Lewis is at risk of SUDEP (Sudden Unexpected Death in Epilepsy) So having us near him overnight could literally save his life. It really is that black and white it could be a matter of life or death for him (Sorry to be blunt but that’s the reality of it). 

I know so many of you have already done so much for Lewis and our family and your generosity and support has been incredible and overwhelming. But if there is anyone out there who would be interested in sponsoring me for my personal challenge and helping us towards our target then we would be forever grateful.

Much Love,
Gary x.

Raising money for various disability specific items and equipment Life for Lewis Appeal - Raising money for various disability specific items and equipment

Previous Fundraising Projects successfully achieved
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.

  • Multi-Sensory Room in my house (Target achieved and items supplied) - Approx cost = £15,000
  • Wheelchair Accessible/Sensory Garden (Target achieved and item supplied) - Approx cost = £25,000
  • New suitable manual Chunc wheelchair (Target achieved and item supplied - Approx cost = £5000
  • New suitable seat for my Mustang electric wheelchair (Target achieved and item supplied) - Approx cost = £1000
  • A suitable ipad with mounting wheelchair arm/s and sensory/cause and effect applications (Target achieved and item supplied) - Approx cost = £1100
  • 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) (Target achieved and item supplied) - Approx cost = £4000
  • Deposit for a suitable wheelchair accessible and fully adapted Motability vehicle (Target achieved and item supplied) - Aprox cost = £12,000
  • Therapy/Companionship Dog and appropriate training (To be my companion and best friend, and to sit on my lap and also alongside me in my wheelchair and soft room (so I can feel it's warmth), this has a calming influence on me).

Lewis using the Eye-Gaze System at School

Life for Lewis Appeal

Our Special Boy.. Lewis Robert Herbert

Lewis Robert Herbert was born on the 12th November 2002 at 12:20am weighing a healthy 8.2lbs.

After keeping us waiting for a 34 hour labour and being rushed out by the consultant as he was getting distressed. Our 1st baby was here and we couldn't wait to start our family life. The next chapter for Gary & I. He was the most beautiful thing we had ever seen. We had so many dreams and hopes for our little boy. Read more.. Our Special Boy

Raising money for various disability specific items, equipment, and home adaptations/alterations which are NOT available to me through standard NHS provision and statutory services

To get involved and help fundraising for Lewis please contact us

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