MPS Society member Olivia shares her remarkable journey from diagnosis, the challenging pursuit of treatment, to fulfilling her ambition of becoming a teacher.
My diagnosis
My name is Olivia, I’m 26, and I was diagnosed with MPS IV when I was seven years old. My diagnosis came about after I fell over at a school disco and injured my foot. When I had X-rays, they revealed that something more was happening behind the scenes. After my diagnosis, my siblings were tested and my brother Luke was subsequently diagnosed at the age of three.
At the time, we were both too young to understand the impact of the condition but it hit my parents hard. I’m so thankful to the MPS Society for being a lifeline for my parents as they navigated life with two disabled children.
Vimizim
On my tenth birthday, I was the first person at Great Ormond Street Hospital to trial a new enzyme replacement therapy drug called Vimizim. The hope was that it would slow the progression of the condition. Sixteen years later, I’m still receiving this treatment weekly. People often ask how much it has helped me but because I can’t see what my future would have been like without Vimizim, it’s a hard one to answer.
What I do know is that I’m incredibly grateful to have had access to treatment, and I owe a huge thank you to the MPS Society for playing a major role in helping us fight for the funding of the drug back in 2015.
Education and work
Throughout school, I struggled to accept my diagnosis. I pretended to be like everyone else, pushing through the pain so I could walk and do things like my peers. Looking back, I sometimes wonder if this accelerated the deterioration of my joints, but honestly, I don’t think I’d change anything.
I’m stubborn and determined, and if someone says I can’t do something, you can bet I’ll try my hardest to prove them wrong.
I decided quite early on that I wanted to work with kids, probably thanks to being the oldest girl surrounded by lots of younger cousins.
I studied childcare at college and thrived; I’d finally found my purpose.
At sixteen, I started working in a nursery and loved it (though I wish I still had half the energy I had back then!). During a school placement, I realised teaching would be my perfect career. I worked as a teaching assistant in a special needs school for a year before heading to university to study primary teaching. Fast forward three years, and I found myself back in the very same school where I’d once done my work experience, this time as the teacher.
Present day
I’m now heading into my fifth year of teaching, and I’m still absolutely in love with the job. That makes living with Morquio even harder to process. Due to joint pain, I’ve had to reduce my hours to two days a week. I use crutches and a wheelchair to get around and am awaiting an appointment with a surgeon to discuss hip surgery.
It would be easier to switch to a less physical job, but by now, you’ve probably gathered that I don’t accept the easy route.
I’m obsessed with my job. I get to help shape the next generation of little legends, what a privilege. The children I teach are only three to seven years old but their compassion and kindness are remarkable.
I’m grateful I get to show them that difference isn’t scary, and that at the end of the day, we all want to be treated the same.
A message to the readers
If you’re a parent of a child going through a diagnosis, please know this: it’s not a death sentence. You can still live a fulfilling life with Morquio.
My parents lost a lot of hope when they first heard my diagnosis but with my brother now just weeks away from starting university to study accounting and finance, we’ve both proven that life doesn’t end after diagnosis.
Life with Morquio isn’t easy. Losing my independence has been one of the hardest things to accept. I’ve invested in all the latest kit, sock aids, grabbers, clothing hooks, shower chairs!
But the biggest lesson I’ve learned is this: don’t give up on life when it gets tricky.
