Got Your Back Pin - Support Spinal Research
I recently released a charity pin, with all profits going to Spinal Research, the UK's leading charity funding medical research for effective treatments for paralysis caused by spinal cord injury.
This charity is close to my heart, as my best friend Ceri (who I have known since I was six) has been affected by spina bifida her whole life. It's a condition that I know many aren't aware of, or know little about and so I wanted to help spread awareness in some small way, whilst raising some funds for Ceri's chosen charity.
I asked Ceri if she could write her spina bifida story for me to share with my followers, and this is what she wrote:
"I have been lucky enough to have Zabby as my best friend since I was 6-years-old and strolled into Year 1 having just moved to London. Luckily for me, Zabby befriended me and unlucky for her, she has not been able to get rid of me since!
At that point, apart from a scar on my back and having some loss of sensation in my legs/feet, nobody would have ever known that I was born with spina bifida. My Mum was told at the birth of myself and my twin that I had spina bifida and spent two years fighting for me to have life changing surgery to try to stop the effects of it. Fortunately, after a long battle she finally found a doctor at Alder Hay Hospital in Liverpool who took a huge chance and attempted to untether my spinal cord. The operation was a success (or so we thought) and after a long recovery, I was able to run around and play with my sister like any young child would do.
It wasn’t until I became a teenager and started getting various leg injuries, resulting in long periods on crutches and then a long-standing ulcer, that we came to the realisation that something wasn’t quite right. I then unfortunately contracted MRSA in 2009 and lost my little toe (poor little piggy) and developed more ulcers, worsening nerve damage in my foot which left me with little movement and an inverted foot (which resulted in lots of falls as I kept tripping over my own foot – not ideal).
Numerous hospital visits and a vast number of doctors and nurses later, suddenly one of them came to the realisation that perhaps my spina bifida wasn’t quite as cured as we had thought. I was sent for an MRI where the neurologist discovered that at some point following the surgery I had as a baby, my spinal cord had re-tethered itself, causing worsening nerve damage and neuropathy. Finally! We had a reason for all of the hospital visits!
Sadly for my left foot, I lost all use of it and subsequently had my ankle fused in 2013. My symptoms began to worsen and the nerve damage started to have more effect on my lower body. This resulted in another doctor taking a huge chance on me and I underwent very risky surgery in 2015 to try to untether my spinal cord. After 12 long hours of surgery, the operation was a success. However, my legs (being the difficult legs they like to be) were left paralysed. I could see the look on everyone’s faces, worst of all my Mum and the surgeon, who I could see were blaming themselves. I didn’t blame anyone, it was just unfortunate and given that the doctors had no idea whether it was permanent or not, I was determined to stay positive and to walk again if I could.
With a lot of treatment, rehab and the support of my amazing friends and family, I did learn to walk again. It’s not easy - I have lost movement in my right leg (which had never been an issue before), I lost more movement in my left leg, I lost more sensation, other areas of my lower body were affected which hadn’t been before and I live with chronic pain which causes me severe fatigue - but I have an incredible team of doctors who look after me and supportive friends and family. Without them, I probably wouldn't be able to stay so positive and so strong. There are many issues I now have to deal with, along with the worsening of my condition, but as far as I am concerned I am lucky.
There are days where I wish I was ‘normal’ or could just feel normal but I am not and that’s okay. I have spina bifida and scoliosis but that is just a part of me now. I make the most of what I have and what I can do (or at least try to) and just want to help to raise awareness of a condition that not many people know about and to thank the team of people who look after me on a daily basis! There is always someone worse off than you and we should all be grateful for what we have – sh*t happens, that is my life motto and something I will always live by."
Isn't she bloody amazing? Honestly, I've never seen anything quite so amazing as watching Ceri learn to walk again after that operation, even if there was never any doubt in my mind that she would. It's so easy to take our health for granted, but I have seen how spina bifida has changed Ceri's life over the years. It's difficult to know how to help, and for the most part, all I can do is be there to support her (and always have her back), but I wanted to use my creative skills to help in some other way too, so I asked Ceri to pick a charity to support and designed this pin.