JUST a few weeks ago the family of Carrieanne North had no idea what the future held.
The nine-year-old Golborne Community School pupil has congential myopathy - a muscle wasting disease which means she is in constant pain and her ability to move for long periods of time is restricted.
Her parents feared for their daughter’s future, but new results from tests sent to Great Ormond Street Hospital in London have revealed Carrieanne has an Ryr1 gene change (ryanidine receptor gene), which although untreatable means she is unlikely to get worse.
Carrieanne’s mum Cheryl said: “It is brilliant news.
“We went there expecting the worst but it such a relief and Carrieanne seems so much happier since we found out.
“She will still need to go for hospital check-ups so they can monitor her heart and respiratory problems but her lifespan is going to be long, or as Carrieanne says, old.
“The doctors are concerned she could develop sleep apnea in a few years but that is just a possibility.
“She still needs help to do everyday things like her hair but now she jokes that when she is older she will have to employ a hairdresser to follow her around all the time.”
As previously reported in the Journal, the family, of Edge Green Lane, Golborne, have been busy fundraising since they started the Carrieon-fighting fund to raise money for the Muscular Dystrophy Campaign for research into a cure for the condition, and have so far collected £5,276.
“We will continue to fundraise and keep our fingers crossed that one day they find a cure for Carrieanne and the people that suffer from these cruel conditions,” Cheryl said.
Plans include a waxing event on March 29 and a charity concert in April, while the Carrieon-fighting fund wristbands are available from Hair4men in Golborne, Courtyard Cafe in Wigan and the Galley Cafe in Ashton for £1.
To find out more, visit www.facebook.com/pages/Carrieon-fighting.