Hello, I’m Shona, a freelance theatre photographer, writer and access consultant living in the UK. I have Marfan Syndrome, a rare genetic condition, and rely on a wheelchair full‑time outside my flat due to multiple spinal conditions, including a 6cm cyst eroding bone in my lower spine. Over the past 11 years I’ve had 4 major surgeries, including two spinal surgeries and open‑heart surgery.

My current powerchair is almost 9 years old. It changed my life: it allowed me to start my photography career, working with West End theatres and places like the Royal Ballet School, learn to drive, and move out of home. But powerchairs only last 5-10 years, and my needs have changed. It no longer fits me, supports me, or keeps my pain under control. The seat and backrest are the wrong size, there’s no hip or leg support, and I’m constantly readjusting to manage pain. This affects my work, hospital appointments, and even simple days out. Increasingly, I’ve been staying at home because using it has become too painful.

It’s time for a new wheelchair before I lose my independence again.

Why I now need a manual wheelchair with power assist

My life has changed significantly since getting my current powerchair. A lightweight active‑user manual wheelchair with a power assist is now the most practical and accessible option.

My Wheelchair Accessible Vehicle used to give me freedom, but the locking pin on my powerchair often gets stuck on ramps, including train ramps, leaving me in dangerous situations. Also, because of my complex car adaptations, I can’t get a hire vehicle when mine breaks down. I’ve been left without accessible travel more than five times, often for weeks, including over my birthday last year which led to me cancelling a holiday. My powerchair is too large for most taxis, meaning I’m stuck at home whenever my car is out of action.

A manual wheelchair would let me drive a standard car with hand controls, get hire vehicles, accept lifts from loved ones, and use most taxis. It would give me back reliable, everyday independence.

Why I need this specific wheelchair setup

After a 2‑hour assessment with a product specialist and Occupational Therapist, we found the ideal setup:

This setup will reduce pain and fatigue, and allow me to work in theatres with tight, inaccessible spaces where my current chair simply doesn’t fit. I’ll also be able to get taxis easily and never have to worry about whether I have enough battery to make it home.

Why I can’t get this through the NHS or Motability

NHS Wheelchair Services are an underfunded postcode lottery and only provide wheelchairs if you need them inside your home. I can walk a few metres indoors so I don’t qualify, even though I am housebound without a wheelchair.

Motability can provide wheelchairs in exchange for your PIP payments, but I’m the only driver in my household and so use the scheme for my adapted vehicle, which I use daily for work, hospital appointments and basic errands.

How this wheelchair will improve my life

This new setup would restore the independence that changed my life nine years ago, letting me work, travel safely, and live without constant fear of losing mobility whenever my car breaks down. It would reduce pain, increase freedom, and allow me to keep doing the job I love. I would have control and choice over my life back. I hate being in this position again of needing to fundraise, but I also never want to go back to my life before where I was stuck inside, miserable and watching life pass me by.

How the funds will be used

The amount I’m fundraising for covers the wheelchair, backrest, seat cushion, fold down push handles, the power assist, GoFundMe fees and a buffer for if the quote changes between now and ordering due to yearly price rises. Once I have raised 50% of the funds I can order the wheelchair, with the other 50% payment due on delivery. I’m really hoping to place the order before the end of the year to take advantage of getting a free upgrade offer for the wheels. Any extra funds will be placed in a secure savings account to cover maintenance costs such as new tyres and repairs.

Thank you so much to anyone who is able to help, whether that's through donating or just spreading the word. Even a £5 donation can make a life changing difference.