Help Get Debbie Going! Help regain my independence

Hi Everyone! My name’s Debbie

Firstly a huge thank you for taking the time to read my story!

I am making this crowdfunding page to help fund a manual wheelchair, power add-on and all-terrain equipment that would allow me to live a more

"normal" life, better manage my symptoms while out and about and finally be able to enjoy the great outdoors. This equipment will allow me to experience freedom without having to rely on another person to push me, allowing me to regain independence once more.

I'm a disabled radiographer working for the NHS who absolutely loves my job and helping people. I was born with a range of disabilities including spina bifida, proximal focal femoral deficiency (PFFD) which means I was born without a right hip joint and shorter leg, as well as having a split and tethered spinal cord. Most recently I was diagnosed with Chiari malformation which is when the brain presses onto the spinal cord. Daily I experience headaches, neck pain and altered sensation in my arms and hands, chronic pain in my lower back. All of this regularly prevents me from being able to get out independently and safely any more.

Despite all the odds, I defied all doctors' expectations and learnt to walk at the age of 3 with the aid of crutches. I've always pushed myself to fight a "normal" life and try to and live independently as best I can despite multiple operations. I was really proud when I qualified as a diagnostic radiographer in 2011. After spending my whole childhood in and out of hospital at Great Ormond Street, I found a job where I felt I could really make a difference to people, and pay back to an organisation who helped me to achieve what was considered impossible.

In recent years my health has declined and I've seen a significant reduction in my mobility. I've become more reliant on using a wheelchair when outside the house. As a result, the only time I manage leave the house now is usually to go to work or hospital appointments. I'm heavily reliant on my incredible husband who helps me with day to day tasks such as dressing, washing, cooking and cleaning. I miss being able to go out with my friends and socialising independently as this has become very challenging at times, especially when involving any physical activity. I would love to change this for the better.

I really wish I didn't have to ask friends, family, strangers and charities to help me access life-changing medical equipment but this is unfortunately the case for so many of us living with chronic illness and disabilities. It's easy to assume that disabled people are given the equipment they need, however this is sadly not true. Up to now, I have been able to self-fund the equipment but sadly I am not in a position to do this this time. As an ambulant wheelchair user (someone who can walk very short distances with crutches) the NHS is not able to provide any support.

The total cost of a new suitable wheelchair comes with a hefty price tag of £2600. In addition to this the cost of the power add on is £6200 - a combined cost of £8800. Seeing it written down makes me feel physically sick. The price of freedom turns out to be a costly one and seems like an impossible mountain to climb. Although I already own a wheelchair, it is bulky and heavy and is not suitable to be paired with a power add on and all-terrain equipment so it does simply not meet my needs any more and curbs my freedom rather than increases it.

I currently live in a village in East Yorkshire that has beautiful countryside. Unfortunately, due to living at the top of a hill, I am unable to use my wheelchair independently to leave the house and instead have to rely on driving places and thus I am unable to experience this natural beauty other than through a car window. I have always loved being outdoors and to no longer be able to access this has had a significant impact on my mental well-being and overall health.

After a lot of research, I recently took the equipment recommended for me for a demo and as you can see in my photo and from the smile on my face, it was the best day of my life! The equipment was a Quickie QS5X which is a strong yet light wheelchair designed to make self propelling more efficient, reducing the impact on my arms. It also folds up so it can fit into my car for transportation. This was combined with the Triride T-rocks all-terrain power add on. The power add on is used much like a bicycle, with a simple throttle to move forwards, allowing me to conserve so much energy and reduce my cognitive strain. It also eliminated the need to rely on someone to push me once I get tired. The wheelchair itself has a specially designed ergonomic cushion adding support to help make me as comfortable as possible unlike my current chair which is uncomfortable to use for any length of time.

The all-terrain equipment would finally enable me to access the great outdoors and countryside. It would allow me to engage with my friends, opening up to me a whole new world. This would massively improve my mental health and quality of life, and I could even get outside on bad days. During the demo, I was able to get outside and enjoy the fresh air without feeling guilty about someone having to push me. Instead I could move alongside those I was with. I felt more like an equal and it was incredible to be outside without worrying about getting tired or having someone to push me. The new set up would remove the safety concern over small gradients and in fact is able to tackle hills easily without the risk of tipping over and injuring myself.

When I got to trial this equipment, I was so incredibly happy and excited at the thought of the freedom it would bring me! I couldn’t stop grinning like a Cheshire Cat! I would be able to have so many more opportunities and experiences with my husband, my friends and my family that have been impossible for so long. This specific wheelchair and power add-on are also lightweight and easy to assemble which will make life so much easier for myself to use the equipment independently.

Simply put, this mobility aid will mean freedom for me. Freedom from isolation. Freedom from the same four walls. Freedom from pain and fatigue. And, access to nature - something that brings me so much joy.

If you are able to spare anything to help me get this life-changing equipment - or even just share this GoFundMe - I would be so grateful. I know times are incredibly tough right now for all of us, so any interaction with this crowdfunder is very much appreciated.

Thank you for reading.