27 days to go

27 days til we drop 80ft! Phillip Butterfield Shane Jeffery Kate Davies please sponsor us at www.justgiving.com/mpsabseil

Today I will tell you about Corey's knobbly knees!
He has knock knees - there is approx a 10cm gap between his ankles when his knees are together. Corey's bones haven't developed properly and he will have surgery within the next few years to straighten them up. This involves putting plates in his legs in 4 places to stop his bones growing on 1 side therefore allowing the other side to 'catch up' and straighten his legs.
We see an orthopaedic surgeon every 12 months at Bristol Children's Hospital.
Corey wakes up in the night sometimes, complaining that his knees hurt, usually after soft play!

28 days to go

28 days to go! Shane Jeffery Kate Davies Phillip Butterfield

MPS causes a build up of GAGS (glycosaminoglycans - long chains of complex sugar molecules) all over the body. One place these are stored, instead of being broken down are in joints. 
You can see that Corey's fingers cannot lie flat, they are 'clawed', a classic feature of MPS diseases.
He suffers from intermittent pain in his fingers and hands and it hurts if he falls onto them.
At the moment this hasn't hindered his motor skills too much although he can't do up buttons or zips but he's pretty good for short bursts on a climbing wall! 

Please donate at www.justgiving.com/mpsabseil

Countdown to MPS Awareness Day 2015

With MPS Awareness day coming up on May 15th and as Corey is the face of the 'Wear it Blue' campaign I felt the need to do something 'big' this year!
So I have roped in Shane and a few friends and we are abseiling 80ft down a cliff at Berry Head in Brixham!
To tie in with asking people to donate to The MPS Society I took to Facebook for a countdown whilst raising awareness of how we live with MPS and what Corey has to deal with on a daily basis.
Then this weekend I thought I should put it on here also - for those of you who aren't on Facebook and may still get an email if you're following the blog!

So here's the catch up for the past 10 days!

29 days to go til we lower ourselves down an 80ft cliff!  Shane Jeffery Phillip Butterfield Kate Davies Please donate at: www.justgiving.com/mpsabseil

I figured I'd give you an insight into life with MPS over the next 29 days. The good, the bad and the ugly - it's all in the same package you see.
I'll start with an obvious one - Corey wears hearing aids.
He was born with severe hearing loss which has fluctuated over the years and, at the moment, he is classed as 'moderately severe' meaning he can't hear a dog bark, an alarm clock and certain phonic sounds like ch, sh, k, ee and f without his aids.
He has hearing tests locally every 8-12 weeks which take about an hour and is also seen in school by a hearing advisory teacher each half term for about half an hour.
Corey wears radio aids at school which allow his hearing aids to filter out background noise so that he can just hear the teacher.
He wears his hearing aids from 7am til 7pm.
Corey chooses the colour of his hearing aid moulds each time they need changing, at the moment they are green and yellow!