Kai’s Story

It all started when my PE teacher noticed that something was wrong with my feet I think more specifically I had high arches or something and she noticed that I struggled to walk a bit and she told my mam so my mam as most parents would do is get me a doctors appointment and that was the start of my diagnosis journey. Doctors constantly moved me around doctor to doctor and we still got no answers to what was wrong with me. A lot of doctors constantly medically gaslighted us and blaming whatever was going on with me was because of my mother's "bad childhood" which honestly I do not understand how. I eventually met a physiotherapist named Emma she was the only one who would listen and she would brighten up my day. When I was around 9 or 10 im not 100% sure how old I was but we met this doctor after being transferred to a bunch of doctors constantly getting dismissed but finally we found the right doctor who diagnosed me with hEDS although there was suspicion that I had multiple physical problems but no one knew what. I got clinically diagnosed with hereditary spastic paraplegia but of course it wasn't a proper diagnosis and just a clinical one. I've been called a mystery pretty much my entire life and then in early 2019 I got surgery after I saw a surgeon and he said he could try to straighten my feet at the time so I got the surgery and it took a while to recover and I stayed in hospital for around a week but with the help of my classmates, friends and family at the time I got through it. After I got through all that, secondary school came and it was honestly the worst year's of my life I finally got my diagnosis for autism which was good to know of course. Year 7 was good apart from not really being able to join in PE when they had the trampolines out or just in general, but year 8 was terrible because I stopped going to school for a while because walking around school was just to much for me as it was a big place so I was in flare ups quite often because of it. Year 9 was probably when my mental health started getting so much worse, I ended up self harming all the time, panic attacks constantly but I pushed through Year 9 and kept trying everyday to just get through it which I am so thankful for my teachers and my friends for helping as much as they could when I couldn't help myself. Year 9 was also when my foot deformities started getting so much worse and my ankle kept turning on me, I then found out that I needed more surgery and so from then it was a pretty big waiting list but the day finally came on may 10th 2024. By this part I was in year 10 but I couldn't go a week with being in school and it was rare for me to be in school. My surgery this time was for the same thing in 2019 and this time I had a bit of a better experience in the hospital, I was in there for a week although this time I was completely not able to weightbare because it would ruin my surgery so I was of my feet for a while. I was then under anesthesia 2 more times after that all in a few weeks although I dont really remember why but I know one of the times was because they needed to put my foot in a better position and to check my foot because my body wouldn't relax even with the laughing gas I had. Then when I was starting to get on my feet more and I was feeling good and was able to take care of myself more I then needed another surgery in 2025 because they needed to lengthen my achillies heal which I was on my feet quicker then other times which im glad about because right now im on my feet. But of course my legs had to give me other problems, my right knee is very painful and I struggle to walk on it at the minute and my legs keep giving up on me and I have an appointment with my surgeon on the 22nd of June which im very worried about because of how bad everything is. Although I am now 17 and I have made it so far and I have been able to apply for college and started getting my life back. I wanted to share my story because maybe someone out there will relate to it and feel comfort in knowing that they arent alone in this and theres so many people who are also struggling to get their lives back. My goal in life right now is to help kids like me that didn't get that support when I was a kid.