Fundraising for my new innovative wheelchair
Donation protected
Hello everyone
My name is George Tappenden. I am thirteen years old and live in Kent. I am fundraising for a new wheelchair. My current chair I've had for six years now and the warranty is now expired. The typical lifespan of a custom wheelchair is approximately 5 years - depending on the type of chair and the environment where it is being used. Some people live very active lives and put lots of wear and tear on their wheelchair. Power wheelchairs have many actuators and electronics that will break over time. Please read my story below.
Instagram @Georgetappenden1
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My condition
I have a rare condition called spinal muscular atrophy type 2. This condition makes my muscles very weak, and as I grow, my muscles struggle under the weight even more, making things harder to do. SMA effects all my external muscles such as my legs, arms, neck and hands etc, and it also effects my internal muscles such as the ones that help me to cough. Therefore I use machines to assist me in this. I have never walked and have only ever stood with Orthotics and a Standing frame. I have had a spinal fusion due to my back muscles not supporting my spine causing scoliosis, both of my hips are dislocated and I have knee, hip and foot contractures. I am currently on a treatment called Risdiplam which is helping to maintain the strength I have.
So that's the negative stuff out the way. To learn more please read the link below.
About me.
I love music and play the drums. I recently achieved distinction in my first grade which is a accomplishment I'm proud of given how weak my arm muscles once were. Me playing the drums.
I do weekly physio and core training with my physio Rose and PT Scott to keep my muscles strong muscle. The less I do the weaker they will get.
I go to Saint Gregory's Catholic School in Tunbridge Wells. I am a straight A student. I am on the school council and take part in science club, Boccia Club, Boxing Club and Warhammer Club. I also achieved distinction in my Grade 3 LAMDA Exam.
I have one sister called Evie, a dog called Mitzi, and two cats called Maggie and Max. I love spending time with my family and friends and love to game.
What I have done to help others and my Awards.
I am a big campaigner & took part in a community campaign (one of the biggest this country has seen for a rare condition) to fight for the first ever treatment for Spinal Muscular Atrophy. This drug is called spinraza and is given via lumbar puncture.
I have protested outside NICE, spoke in the House of Commons, ITV, Sky & BBC News, live Radio & was interviewed for local & national newspapers including The Daily Mail. ’
Whilst the fight for treatment happened in the UK, I decided to travel to Paris for just under two years to participate in a trial for the first oral drug for SMA and second ever treatment, called risdiplam.
The evidence & my experience with risdiplam was then used at the appraisal with NICE here in the UK where it was approved via a Managed Access Agreement and so was spinraza. My photo now appears in the risdiplam instruction booklet for the drug. I was also chosen to speak at the pharma company last seminar to give a insight into my life with SMA & how treatment has helped me – hoping to help others and reinforce the need for continued research & awareness in to SMA. They also spent a day filming my life to show a true insight.
I am very passionate about inclusive media representation & the difference it makes to children’s self-esteem & self body image who have disabilities, so I model with Zebedee Talent. One of my jobs was a life size photo taken of me in my wheelchair & it was used by a leading supermarket in every store in the UK, one of the first to use a power chair. I also appeared in their TV advert.
I fight for accessibility rights in my town. I have done interviews & spoken with MPs – even to get my own adapted home purpose built due to lack of accessible housing.
I also fought to remain in mainstream education & spoke about the importance of inclusivity & choice. This fight I won with the help of ‘St Gregory’s Catholic School’ who made adaptations for me which will pave the way for others in wheelchairs. I now speak regularly to all year groups in assembly about the importance of Inclusion within school and friendships.
On 18th May last year I made National News again when a Investigating Journalist Team from Sky came to film me for the day for a documentary on how the Government is failing children with disabilities. They focused on accessibility with me and this has been aired several times already this year.
In July I spoke on stage at The Grosvenor Hotel London to businesses about my condition and the physical and emotional impact it causes me and those around me. A video was also played to two thousand individuals showing a insight into my
daily life having had a film crew at my house for two days prior to the event. This event raised over £400,000 for the Variety Children’s Charity. I have since been made a National Ambassador for this charity.
I have many appointments that I attend & I also do weekly physio and PT sessions. I upload parts of these sessions to my social media platforms (that have eleven thousand followers altogether) to inspire and motivate others, help with ideas and for those that cannot access physio with my condition across the globe.
The videos have also been used by Great Ormond Street Hospital, John Florence Orthotics, pharmaceutical companies and ProfessorBush from the Royal Brompton Hospital in talks and seminars to educate others on my condition across the world.
I have gone through quite a bit from illness, losing strength and abilities, to a trial, a spinal fusion and then to missing a lot of my education & won two awards since starting Secondary one being for ‘Fantastic Influence & Work’. I also won a local Mayor award for my work in the community.
Finally I was awarded the amazing Positive Role Model Award for Disability this year at the 2024 National Diversity Awards. I also made The Shaw Trust Top 100 most influential disabled people in the UK.
The chair I'm raising funds for.
Two months ago, I trialled the new iBOT PMD with Precision Rehab Limited. This is an amazing chair from getting over curbs, small or large and climbing stairs (with one assistant for those with weak arm muscles like me).
This would open a whole new world for me, as the current world we live in is simply not built with wheelchair users in mind. It means I can access shops, friends houses, parts of my school that can not be altered due to structure, theatres, places my friends go to, cities, days out that are not accessible, take part in new activities, go to countries that are less accessible and travel. The list in endless.
It also works on all types of sand and gravel. This means I can go on the beach and into the woods etc. Simething i cutrently cannot do and gave never experienced driving my own chair on a beach before.
I was able to move the chair just with the use of my body. I became one with the iBOT as it adjusted to my centre of gravity, leaving both my hands free. This means I could open doors and cupboards as I'd have both hands free and be able to get closer to the doors.
It means I could box easier and the chair would move with me rather than one hand having to control the chair and the same with physio and my PT sessions.
It means I could dance and the chair would dance with me.
This chair is the closest thing to feeling like walking and being free. The chair moves to me rather than me moving the chair.
For me, I would have to have a head rest, recline, tilt and space, and an adjustable foot plate added. This is reflective in the quote which is at the end.
Pretty epic, I have to say..to see it climbing stairs and go through snow check out iBOT on YouTube and TikTok.
"The NEW iBOT PMD
✅ Climbs Up & Down Flights of Stairs
✅ Standard Driving Mode enables the chair to be driven indoors & outdoors like a conventional power chair
✅ Balance Mode gives the user the nearest feeling to actually walking, it also enables the user to walk at the same head hight as friends & family, one other benefit it allows increased manoeuvrability allowing access to places other power chairs cannot access
✅ 4 Wheel Drive Mode makes going up and down steep kerbs, steps, ramps and slopes easily while keeping the seat and user level at all times, this mode also copes with soft sand, gravel, rough terrain and rugged surfaces
✅ Remote Mode allows the iBOT to driven safely up ramps indoor car boots even with lips for transport
A link showing what the IBOT can do.
The Quote
SocialMedia
Instagram:
Facebook:
Tiktok:
So basically that's it in a nutshell. I would be so grateful to anyone who could donate or share this link.
Thanks for your time.
George x
Organizer
Lucy Frost
Organizer
England