23 days to go

23 days until we have to lean over the edge of a cliff at 80 ft and abseil to the bottom!  Shane Jeffery Kate Davies Phillip Butterfield

I'm actually afraid of heights but have renewed energy to face my fears today! Corey had an MRI scan under general anaesthetic but before that he had a trial in the scanner, awake! 
MRI scans are annual affairs for Corey to check his brain and spine to see if there have been any changes, but due to some behavioural changes this one has been brought forward to 5 months. 
He has to have general anaesthetic as you're not allowed to move during it and the scan takes approximately 45 minutes. As Corey is a high risk anaesthetic due to narrowed airways and possible complications caused by MPS, these are always done at  Bristol Royal Hospital for Children.
We went to a pub for a carvery dinner tonight (after hospital visits Corey has free reign to do anything he wants!) He said he liked it there but didn't like hospital. I asked if he was scared at hospital and he said "No, I just don't like it when they pull my skin off" meaning pulling the plaster off and taking the cannula out before we can come home!
So, if he can do everything he's done today and not feel scared and still have a smile on his face, I'll be smiling my way down a rock face thinking of how amazing he is and that I'm doing it to raise money for The MPS Society who will eventually find a cure for this disease that puts my child through so much.

Please donate at www.justgiving.com/mpsabseil

24 days to go

24 days until our abseil 80ft down Berry Head!
I am counting down the days to our abseil by raising awareness of what it's like living with a child with MPS1 Hurler syndrome.
Corey wears glasses. He is long sighted and has an astigmatism meaning his eyes balls are rugby shaped not football shaped. 
He has cloudy corneas, which is what prompted the initial test for MPS when he was 8 months old. The front part of his eye is not clear like it should be so it refracts light differently causing squints and eventual blindness.
We visit the optician, optometrist and ophthalmologist every 6 months at our local hospital. These appointments involve lots of tests and eye drops and more tests and can take up to 2 hours. Corey is also monitored for high pressure in his eyes due to post transplant complications. 
These are one of the worst appointments for us as he hates the eye drops and by the time he's seen 2 specialists when we get to the last one he's had enough and doesn't want to sit still in the chair with his chin on the stand pretending to ride a motorbike, long enough for them to have a good like at his eyes! 
Please donate at www.justgiving.com/mpsabseil

— with Shane Jeffery and 2 others.

25 days to go

25 days to go! I was talking with friends earlier about how Corey's hair and face has changed over the years due to treatment he has received. So todays post is photos of Corey through the years. He had chemotherapy which made his hair fall out, cyclosporin which made his hair grow back, everywhere, and steroids which made him gain weight all before he was 3! Donate at www.justgiving.com/mpsabseil