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Family fights against daughter's incurable condition
6:30am Friday 22nd November 2013 in News
THE family of a young girl with a muscle wasting disease are facing an agonising wait to find out what her future might hold.
Carrieanne North’s parents knew something was wrong from very early on but she was not diagnosed with congenital myopathy until two years ago.
Recent MRI scans of her legs have now been sent to Great Ormond Street Hospital to identify which type of the condition nine-year-old Carrieanne has.
Her mum Cheryl said: “There is nothing they can do for her now apart from manage her pain. The results will give us more of an idea of what is going to happen to her in the future.
“It is a huge strain on the family but we have known something was wrong from the day Carrieanne was born. Since then we have been taking life one day at a time and it won’t make that any different.
“She is just like any other girl; she is always smiling and giggling.
She has her days when she is sore and then she turns into a teenager in a nine-year-old’s body.”
Carrieanne, who lives on Edge Green Lane in Golborne with Cheryl, dad Mark and her younger sisters Courtney and Cathryn, struggles with the simplest of tasks such as climbing stairs, running, jumping and struggles to walk far. Even getting up off the floor is hard for her.
Although no cure or treatment will help and all that can be done is to manage her pain, the results will provide a little more knowledge about what the future might mean for Carrieanne.
In the meantime her family have set up a website to help raise money for research into the condition and allow Carrieanne to meet others who suffer similar conditions.
Cheryl said: “We decided to set up a website to help Carrieanne because she was very embarrassed about her condition and didn’t like people knowing why she struggled and needed help with things her friends and sisters didn’t.
“But since starting the website she has come on leaps and bounds in terms of confidence.
“She really thought she was the only person who struggled but the website has shown her that she isn’t and that there is nothing to be ashamed of.”
The latest fundraising efforts include an auction where bids for a Wigan Athletic signed football and a signed Johnny Vegas book can be bid for on twitter.
For more information visit carrieon-fighting.com.
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