GENEROUS donors across Coventry have helped raise more than £64,500 to fund breakthrough surgery for a talented 12-year-old ice skater with a curvature of the spine.
Coventry schoolgirl Macy Handley, who is a member of Mensa – the organisation for people with a high IQ – was diagnosed with idiopathic scoliosis 18 months ago, resulting in the spine curving sideways and twisting at the same time.
Her family are seeking an alternative to her wearing a rigid back brace more than 20 hours a day. Earlier this month they launched a £90,000 JustGiving campaign for a ‘new and promising’ treatment not yet available on the NHS known as Vertebral Body Tethering (VBT), developed in the USA.
Mum Kerry said: “She is incredibly creative, a skilled artist, a thrill seeker, a naturalist, an ice skater, a member of Mensa and diagnosed with ASD/Asperger’s.
“In July 2019 we noticed a lump on Macy’s back near her spine. An x-ray uncovered abnormal curves in her spine as well as a rotation, not long after, she was diagnosed with idiopathic scoliosis. The consultant provided her with a brace which she needed to wear for 20 hours per day.
“The brace was uncomfortable, restrictive and rubbed on her neck, in between her legs and under her arm which triggered her severe sensory issues which over time has massively impacted on her mental health. Despite this, Macy persevered and tolerated the brace as she, like us, hoped that it would prevent the need for an operation.
“In July 2020 an X-ray showed no significant change to Macy’s curves, we were happy that the brace seemed to be working and after some therapy sessions, Macy was able to manage her sensory issues a little better.”
But recent X-ray results have revealed that Macy’s curve has increased at a “significant and abnormal rate” of increase.
Kerry said: “There is an alternative. Vertebral Body Tethering (VBT) which in essence is an internal brace. The recovery is much quicker than fusion, back to school after just six weeks, her range of movement will be near normal with minimal impact on her future and the scarring is barely noticeable.
“This is a breakthrough treatment widely used outside the UK which is proactive and can prevent the need for spinal fusion. VBT had been featured on BBC news. Many parents have been forced to take their children outside of the UK for treatment however there is an amazingly talented surgeon here in the UK who is very experienced and has had high success with many patients.
“VBT has limitations and a specific selection criteria which at the moment Macy fits. Unfortunately, further increase to the curvature of her spine or waiting longer could reduce the flexibility of her spine and push her outside the possibility for VBT so time is of the essence.
“We haven‘t taken this decision lightly and are confident that VBT offers Macy the best chance of growing up to have a close to normal life and be able to enjoy all of the things other girls her age enjoy.”
A trip to London this week to see Mr Jason Bernard, Consultant Orthopaedic Spinal Surgeon at Wimbledon Clinics, who specialises in VBT was extremely positive. He told them Macy would be a good candidate for surgery but the operation would need to take place soon, before the end of May.
In a Facebook Vlog Macy, who reveals she hates needles, said: “I was really, really surprised when he told me I could still go on holiday in October which is absolutely brilliant! We’re going to Devon for Lyra – our dog’s – first holiday.”
Visit https://www.justgiving.com/crowdfunding/macy-handley/ to donate to Macy’s fund-raising page.