Christian (MPS IV)
Christian has MPS IV Morquio disease.
Morquio disease is caused by faulty genes. It has lots of different effects on my body and I look different from other 12 year olds. I am short, in fact, I am very short. I am only just over 1 metre tall and I have lots of joint and bone problems.
The joints in my arms, legs and hands are all too loose which can be very painful. My breast-bone sticks out, which is why the doctors say I have a pigeon chest. I also have lots of serious problems with my spine and I have had some big operations to fuse the bones in my neck.
My disease is caused by a missing enzyme which healthy kids and adults have inside them. In healthy people, this enzyme breaks down waste products in the cells and gets rid of it. As I don’t make the enzyme needed, molecules store up all around my body causing all of these different problems and more. My body will never be able to make the enzyme I need, so with each year, my disease will get worse and worse.
My mobility problems mean that I need to have my bedroom on the ground floor so that I can get around in my wheelchair. My Mum and Dad needed some help to arrange this, so they contacted the Advocacy Team at the MPS Society.
Story from Christian’s Mum and Dad
“When we decided that Christian needed to have his bedroom on the ground floor, we immediately wondered how we would be able to afford to make the changes. Our house only had upstairs bedrooms and we needed to convert the ground-floor for Christian.”
“Having got some quotes, we found out that the work would cost more than the local council grant. We knew that we needed help finding this money, so we contacted the MPS Society for advice and support. Their Advocacy Team made a home visit and were incredibly helpful, writing applications for grants to other organisations for support. We managed to find some of the money ourselves, but we had a lot more to find.”
“After a lot of effort and hard work, the MPS Society managed to get grants from seven different organisations and from there, we were able to begin work on Christian’s new room.”
My bedroom is really great. They have given me a new bathroom and everything has been lowered down so I can reach anything I need. All of the switches are easy to use, which is very good because I find it hard to flick switches when my joints are hurting. There is plenty of room for my wheelchair now and I don’t crash into everything as much. As there is so much more space, my brother can share with me so I don’t have to be the only one in the family who sleeps downstairs.
I am very grateful for all the help my Mum and Dad received from the MPS Society’s Advocacy Team. Please help the MPS Society carry on this work by supporting them through fundraising.