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.
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
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