Pursuing Sophia's Drama Dreams: Fundraising for a New Wheelchair

Sophia is a 17-year-old student at the prestigious Brit School who has life goals and big dreams: to be on stage, to be a mum, and to travel, in that order! She has faced barriers during her teenage years which has threatened to derail her goals, but she is determined to make sure that her health battles don’t stand in the way of her dream to be a performer, journalist, or even disability correspondent.

Sophia’s condition
At the age of 14, Sophia began to lose the ability to walk, and was diagnosed with an extremely rare genetic condition called progressive pseudorheumatoid dysplasia, or PPRD for short, which Sophia herself explains “is basically a bunch of big words that mean fake arthritis. I'm missing a gene called CCN6 which is responsible for the renewal of new cartilage between the joints and without that, the cartilage stays and builds up, so it can cause the bones to become quite swollen and painful and they lose a lot of mobility”. The condition is progressive, and currently Sophia’s hips are her most badly damaged joints, but flare ups or regression of the condition may mean that other joints are affected later down the line.

How Sophia’s life is currently affected by PPRD
Due to the nature of her condition, Sophia uses a wheelchair to help her get around, which was supplied by the NHS.

Sophia’s school days are not quite like your average 17-year-old’s timetable due to the fact that she now attends the Brit School, the UK’s leading performing and creative arts school. The lessons and workshops in her drama course are physically demanding, not to mention the large campus that she needs to get across to get to different classes, so her parents decided to look for a future-proofed motorised wheelchair to make life as easy as possible, and so she can invest as much time and energy into her course and future aspirations, without her condition getting in the way.

Plans for a New, Life-Changing Wheelchair
After doing their research together as a family, they discovered the best thing she needed was an active chair which is much easier to maneuver.

Attached to the chair is a yomper, which goes underneath the chair and has a controller which allows Sophia to double tap to propel herself, which will protect her joints, bones and muscles and give her some relief from self-propelling. Sophia describes the new wheelchair as something that “would be life changing. It would give me so much more independence, something I've not had for long time. I'd be able to go out with friends – maybe even get the train, though I am a bit scared of that!”.

The financial barrier between Sophia and an easier future
Having trialed the new wheelchair at a showroom, Sophia said that it felt “like an extension of me” which her mum, Andrianna explains is “not really the kind of sentence you want your teenage daughter to be uttering at age 17, but you know, we've been handed this and we've just got to accept it and do whatever we can to make Sophia's journey with a wheelchair a lot smoother.” The wheelchair and it’s motorised attachment has been quoted at £12,000 and is not available on the NHS, so that is why the family turned to Tree of Hope to fundraise.

Fundraising with Tree of Hope
Having explored a list of charities which may have been able to support their fundraising journey, only Tree of Hope appealed to the family as “it just offered a bit more freedom. It meant that we could be really actively involved in helping to raise the funds, which we felt was important”, Andrianna explains. The idea of being with a registered charity was something that Sophia’s parents loved, who wanted her campaign to be “as genuine as possible and we wanted the seal of approval from a recognised charity so that people knew that this was an absolutely bona fide cause that we were raising money for. Obviously, the ability for UK taxpayers to add gift aid onto the donations, which obviously we couldn't do as individuals, is a big bonus."

After just one week of fundraising, Sophia’s campaign reached £6,000, 50% of her target and Andrianna has “just been overwhelmed by the support. It's just left me speechless at times, when I've seen the donations flooding in and people support Sophia, so that she can realise her dreams.”

Hopes for the future
Sophia has her eyes firmly set on a career on stage:

Sophia also hopes to become a disability advocate in the future and to become a disability correspondent to combine her interests and strong passions.

Advice to fellow parents looking to fundraise for their child
Sam and Andrianna were quick to admit that they were hesitant about fundraising and kept putting off the inevitable. Andrianna found it “really difficult to put myself out there and I had this sort of inner struggle with myself to be so public and push this campaign forward, and yet, when we did finally gather the strength to do that, the support has been so overwhelming. We know that people are behind us and are willing us to get to our target in a way. So for anybody who, like us, is really nervous about exposing yourself like this, I would just gather your strength and just press send. Just do it. And this weight will lift from your being and you will just be amazed at how wonderful your friends and your family and your network really are. So just go for it, do it for your children, really do it, do it for them.”

Follow Sophia's campaign here