Life for Lewis Appeal

Raising money for various disability specific items and equipment

LATEST NEWS:
Sept 2018-19 - Running 1,600 Miles and Going Sober for 1 Year

Now that the dust has settled on the Incredible Life for Lewis Golf day, and having had a good long think about possible future events for the Life for Lewis Appeal, I have decided not to do a main event for him in 2019.

The only challenge I will be doing is the small matter of trying to run 1600 miles in a year (100 miles for each year of his life so far), as well as not having any alcohol for a whole year.

JustGiving online donations - click here

June 2019: Herby’s Final Furlong to the Hart (1600th and final mile)
If at all possible I would really love all those who have supported me, sent good luck messages, and donated to my challenge of running 1600miles in a year to join me to run my last and 1600th mile of my challenge, or if you would prefer, meet me at the finish line at The Old White Hart on Sat 29th June at 1pm approx to help me celebrate reaching my running target. Having as many people as possible running the last mile with me, and, or being at the finish line would be incredibly special to me. We can then all have a catch-up, drinks and food.

June 29th: I'm dreaming of ZERO MILES TO GO !
June 20th: Another 10 Mile run. Back to back, horrible!, body a mess and swallowed a fly! It’s the Final Countdown! #1576milesdone #24milestogo
June 19th: 10 Mile run. It’s the Final Countdown! #1566milesdone #34milestogo
June 17th: Half marathon (58th of my challenge in 9 and a half months!) It’s the Final Countdown! #1556milesdone #44milestogo
June 14th: Another 11 mile run. Sore back and feeling emotional!. It’s the Final Countdown! #1543milesdone #57milestogo
June 12th: 11 mile run. Another one ticked off. It’s the Final Countdown! #1532milesdone #68milestogo
June 10th: 11 mile run. Heart rate got up to 228bpm on mile 4 which is a little concerning! (Hope it was my watch playing up!). Toe nail hanging off as well!. It’s the Final Countdown! #1521milesdone #79milestogo
June 7th: Another 14 mile run. Quite frankly it was horrendous!. Was like a drowned rat, come rain or shine!. Body broken, but on the plus side I’m down to double digits left, 90 miles to go!. It's the Final Countdown! #1510milesdone #90milestogo
June 5th: Another 14 mile run. Really sore and stiff legs, and body screaming at me to stop!. Running on empty ! The closer I get the further it seems away!. It’s the Final Countdown! #1496milesdone #104milestogo
June 3rd: Another 14 mile run. It’s the Final Countdown! #1482milesdone #118milestogo
June 2nd: Kicked off June with a 14 mile run. It’s the Final Countdown! #1468milesdone #132milestogo
Sept 2018-19 - Running Sober more details

Welcome To Lewis' Website

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

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) http://sudep.org/. 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

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).