Caleb (MPS II)
Caleb has MPS II Hunter disease.
My mummy has asked me to take 5 minutes out of my busy day being a typical 4 year old, to tell you something about myself which makes me very special.
Hello! My name is Caleb and I am 4 and a half years old. I have a very rare condition called MPS II Hunter disease. Mummy says us Hunter boys are very special, because here in the UK there are only about 80 of us!
Living with my condition means that sometimes I get quite poorly and mummy says as a result I have many things called “ailments” a bit like the tin man from the Wizard of Oz! I have to keep well oiled! I cannot hear very well, and this means that my speech has been affected. Mummy and daddy help me learn words through signing, visual aids, and at school we use Makaton or Signalong. My favorite sign is “More” putting one hand over the other. This usually works to get a biscuit! I get very frustrated because I cannot communicate in the way I really want to, this sometimes makes my behaviour quite testing. When I get really upset, sometimes I will smack the wall or even bang my head. I can’t explain why, it’s just the only way for me to express my frustration. Mummy helps distract me with drawing and things which help me relax like cooking or painting.
During the winter when the weather is cold, my hands get very cold and stiff and this makes me cry. I have had an operation on both hands to help with this, its called Bi Lateral Carpal Tunnel decompression, the surgeons helped to release the nerve which can cause some of my stiffness. Mummy helps by massaging some smelly oil into my hands called Lavender. I really like that, but I don’t like the smell! Every night after I have had a bath, my mummy massages my body which I love. This helps me get off to sleep. Mummy is lucky, because I love to sleep, but I also love to cuddle and when my bed gets cold, I sneak into the middle of mummy and daddy’s bed to warm up and get cuddles. I don’t like to be on my own during the night because I can’t see very well in the dark.
Just after I was diagnosed the big hospital in London gave me some magic medicine. It is Enzyme Replacement Therapy (ERT). Very clever doctors and scientists mixed this special medicine for boys like me so our bodies are helped. Every week my mummy mixes this special medicine and inserts a little gripper needle into my magic button (port-a-cath) and my magic medicine slowly pumps around my body for about 4 hours or so. This medicine really is magic and gives me lots and lots and lots of energy!
I love to run and play and this medicine helps me to do all the things I love. You see, I am a normal little boy and I love my life. Unfortunately, this magic medicine does not reach my brain which has been affected by my condition, so some more very clever doctors and scientists made a better type of Enzyme with is being tested on boys just like me, here in the UK and in the USA. I am one of the those little boys who is taking part in this special trial which helps the doctors learn about how the enzyme might help my brain, and other special boys brains in the future. So every month I go to see my lovely nurses and doctors at the hospital and I spend four days with them. I am very good with all my appointments, well as good as I can be! I keep all the nurses and doctors on their toes! So although all my little ailments sometimes make me poorly, most of the time I am just me – Caleb, happy, funny, lively, mischievous and unique. I do all the things that other 4 and a half year olds do, except nurses and doctors are my friends, hospitals are sometimes my playground. Everyone always comments on how brave I am, and even though I have to have lots of medical help, I can always manage a smile.