Raise awareness & fund people in need of scoliosis surgery

This is so difficult for me to share as it’s only my closest family and friends who know this about me but telling my story, raising awareness about scoliosis and trying to give back in some way is something I’ve always promised myself I’ll do. So me and some of my lovely friends will be climbing Snowdon on the 1st of June to raise awareness about scoliosis and raise money to donate to people in need of scoliosis surgery, the rest of the money will go to The Scoliosis Association who fund research and give support to people living with scoliosis. ❤️

Aside from always being super small I was never visibly different from anyone else growing up, the first sign that there was something wrong with my spine was on holiday when I was getting a massage by a person who didn’t speak English, who was trying to tell us that something wasn’t right. We didn’t understand or think much of it at the time but a few months later, after experiencing some back pain I felt that something definitely wasn’t right and like something was sticking out of the far side of my back. I asked my friend if she could see anything who said it looked like my spine was sticking out of the right side of my back.

I was 14 and obviously didn’t know what to think but was very scared, nobody else around me had any idea what it could mean or begin to answer the billion questions you have but after googling horror stories about people with scoliosis (absolute worst thing to do) I was petrified and thought the absolute worst as I’m sure so many people in that situation do. A few weeks later I was diagnosed and told that my spine curved in three places over 30 degrees, the wait between my diagnosis and seeing the consultant felt like a lifetime and like so many people in this situation I didn’t have anyone to relate to about it.

In 2014 I was diagnosed with congenital scoliosis and told that it was too severe to solve by anything but surgery, and so severe that I would be in a wheelchair and completely paralysed by my late 20s if I didn’t have the operation. There was also a high chance that I would be left paralysed and unable to ever walk again because of the surgery, and that I could die during surgery due to the extent of my operation. It was the worst day of my life and a difficult thing to process as a child.

I made a bucket list and spent the next year ticking everything off, I can’t thank my family and friends enough for making this the most beautiful and comfortable experience for me and for being so strong and supportive throughout the whole process! ❤️

My surgery came around quick which was 14 hours as they figured my spine had been curving at a more rapid rate than they had predicted. I had two 14 inch metal rods fused to my spine with 18 bolts, it was a very long and painful recovery process where I had to learn to walk again and re-learn everything that I was previously able to do and took for granted, but I made a full recovery, grew 2 1/2 inches, and was back in the gym at 12 months post-op! Also with the surgeons guidance I was given timelines of different things that I could do at different times of my recovery which always gave me something to look forward to and work towards ❤️

But in 2017 we discovered that the surgery had failed and that one of the screws was loose which meant I needed a second surgery (very rare), and for all of the screws taking out and putting back in again, that was 9 hours and the recovery was long, I had to learn to walk for a second time but I was very lucky and came out stronger on the other side! I am now not restricted and back doing everything I previously enjoyed ❤️ Those years were the hardest times of my life and I would not wish for anybody to go through it, but for anyone going through anything similar it gives you a new appreciation for life and the little things that I couldn’t have imagined before, it shows you how unpredictable life is and what’s really important, and it has played a huge part in building me into the person I am today and transformed me in ways I could have only imagined. I feel so grateful for it all and to have experienced for a short time how some people live their whole life, and how strong people really are ❤️

This type of scoliosis is not genetic or caused by anything in particular, so my motivation to share my story is to raise awareness about it and to encourage people to regularly check their own spines and most importantly their children’s, and to show anyone in a situation like this can do it and will come out better on the other side. The sooner that scoliosis is discovered, the more options that are usually available to resolve the issue before having to resort to this type of surgery. Checking for scoliosis during adolescent is a standard procedure in America but unfortunately not in the UK.

I am so incredibly lucky to have had access to the NHS as each operation would have cost my family £270,000+. Unfortunately there are so many people around the world left in impossible situations and forced to sell their assets to fund such surgeries, or just left in a completely helpless situation. I can’t even begin to imagine what so many people and their loved ones are going through, which is why I will be donating half of the money raised to families in these situations. The other half will go to The Scoliosis Association who fund research and provide support to people living with scoliosis. I would also like to put myself out there to anyone going through anything like this, if there’s absolutely anything that I can do to help or support people in similar situations or answer any questions please get in touch ❤️❤️❤️

Any donations will be much appreciated and are going to an amazing cause that will make such a huge difference to so many peoples lives.

I would also like to share this brave and inspirational little girls story, Amelia is one of my closest friend’s cousin who has been affected by a different type of scoliosis at a much younger age.

Amelia is a 8 year old little girl who was diagnosed with idiopathic scoliosis in 2020 when she was just 4 years old due to Amelia’s spine curving at a rapid rate surgery was brought forward in January 2021 where she had one growing rod inserted on the plan that once that was done Amelia could gain some extra weight to have the second rod inserted in 12-18 months from the first surgery on regular check ups, it came to light that despite being braced and already having the one metal rod in her spine was still curving so again just 6 months after the first operation Amelia was taken in for the second rod insertion. Amelia recovered slowly but well and although there is a lot of children's activity’s she can’t take part in she still always has a beautiful smile on her face. Amelia now has surgery every 6 months to have her rods lengthened but is currently under some checks as it may be possible her metal work will need revising and operating again as the top of her spine seems to be curving again.

Thank you so much to anybody who can donate ❤️