Oliver (MPS VI)
Oliver has MPS VI, Maroteaux Lamy disease.
Hi, I am Oliver. I am 17 years old and currently studying accountancy and working full time doing various duties for a pneumatic engineering company.
I was diagnosed with MPS VI in 1999 when I was just 4 years old. At this time there was no cure or treatment to help slow down the progression of the disease but with the research largely funded by the MPS Society, eventually a treatment was developed called enzyme replacement therapy (ERT).
At the age of 11 I had my first infusion at Manchester Children’s Hospital. Within months I started noticing improvements in my health which included: increased energy levels, the straightening of my joints and most importantly after my height had halted to less than 4ft tall… I began to grow once again!
Around 6 months after I had started infusions, it was decided that I could have my treatment at home. A nurse would come to my house each week and carry out the infusion whilst I could sit, watch TV and play computer games with my friends. It was much better having my treatment in the comfort of my home (and the half day off School was a bonus!). After a further 4 years I was ready to leave school, I left with 15 GCSE’s and began work in the adult world!
At first my treatment was a stumbling block as I did not want to have time off work each week to have my infusion. But I soon realised this was not a problem as my mum was taught how to carry out the infusion with a nurse just coming to my house for 5-10 minutes initially to cannulate me. This meant that I could have my infusion after work (on an evening) each week and so I could accommodate the two.
I am generally a happy person and whilst I have to acknowledge the condition I have, I try to not let it affect what I would like to do in my life even if I have to adapt things to do so. I have a large group of friends who I socialise with. We recently had a few days camping on the East coast, and while I may not be able to run with them or walk as far as them, they see it as no problem!
At 17 years old I am now exploring the possibility of setting up my own business and putting my accountancy qualification to good use! Watch this space!