Story
Hi, I'm Skye, I'm 3 and I live in Cheltenham.
When I was born I weighed less than a bag of sugar, just 880g. I was born at 27 weeks but no-one really knows why I was so early. Everything seemed to be going well for me but then my physio started to pick up on some patterns of movement I had which were slightly worrying. She continued to monitor me and work with me until she was sure. Eventually the paediatrician confirmed it - I have Spastic Diplegic Cerebral Palsy.
Since my diagnosis in June 2011 life has been very busy - I've been into hospital for Botox injections, I have an extensive physio regime and I'm being considered for major surgery called SDR. Although I can walk, I've also got a funky pink and purple wheelchair to help me when walking a long way as I tire very easily.
Don’t think for a moment that my diagnosis holds me back – I am a very determined young lady (mum says I’m stubborn!) and I will persevere until I succeed. I love climbing and have just learned to jump. However, my legs annoy me because they don’t do what I want them to do and I get really frustrated!
The SDR operation could help me so much! It will reduce the spasticity in my leg muscles and make it easier for me to move around. It is also very likely that, without SDR, my leg bones will twist as I grow, requiring a major orthopaedic operation when I am 11 or 12 to de-rotate my legs and reattach the muscles in a better position. SDR has been carried out for many years in the US with great success. However, NICE, the UK body that approves medical procedures, has not found the operation meets its standards due to a lack of long-term research data in the UK. This means that the operation will probably not be funded by the NHS.
Please help me to reach my full potential, without my legs getting in the way! Every penny will help me get closer to my dreams.
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