A talented 12-year-old Coventry girl needs life changing surgery after being diagnosed with a rare condition.
Macy Handley is a champion ice skater, fundraiser, Mensa member and passionate environmentalist. However, a diagnosis of idiopathic scoliosis has completely changed the schoolgirl’s life.
The condition means her spine is starting to curve at both ends, into an S shape, as well as rotating, adding extra discomfort.
Because of her condition, Macy has been told to wear a brace for 23 hours a day, taking it off only to wash.
However, a brace that would be uncomfortable for anyone, is made even more so for Macy due to her autism spectrum disorder.
Because of Macy’s sensory issues, the confining nature of the brace is incredibly hard for her. She has been left with rashes and chaffing all over her body.
A surgical procedure is available to get Macy back on the skating rink and playing with her friends normally once again.
But in a blow to the youngster and her family, the op is not available on the NHS and isn’t covered by Macy’s parents medical insurance.
Her parents, who are both police officers, are now attempting to raise funds to pay for the operation, which costs tens of thousands of pounds.
Mum Kerry told CoventryLive: “It’s had such a severe impact on her, as well as just normally growing up like any other kid with hormones. The autism on its own is difficult to deal with and we were just about managing that.
“The brace and autism are two separate issues that compound each other and the issues raised by the brace has really tipped the balance.”
The treatment that would help Macy is called vertebral body tethering (VBT).
Explaining how it worked, Kerry said: “They basically put screws, top and bottom intermittently throughout the spine, and then use a tether, from top to bottom to pull the spine back into place. And as she grows it will grow back into a straight spine.”
While the treatment used to be available on the NHS it has now been pulled as there is insufficient evidence of the long term effects of this particular treatment.
The family are now speaking to a specialist in London who is able to perform the surgery, but they will need to raise the money, around £90,000, to cover the cost.
Describing the impact the issue has had on Macy, Kerry said: “She’s such a kind, sweet child. You know, she’s very thoughtful she’s got quite a heart of gold and is always fundraising and trying to save the environment. Because of her high IQ she’s also a member of Mensa.
“She wants to just be the same as her friends, but the brace she currently has to wear is really having an all-round negative effect on her.
“And with her autism it’s sort of like a double whammy. It’s really, really, really difficult. She’s felt so restricted and obviously being a child she can’t really express that that’s what has been causing her frustrations and anger, and she felt like she needed to escape.”
If you want to find out more about Macy, her condition and how you can donate to her cause, visit the JustGiving page that has been set up.
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