Darcey requires a Gensingen brace to help straighten her spine, regular Eos scans, possible surgery and regular therapy to help build muscles in her core and hands.
Darcey is 8 years old from Ware and was diagnosed with severe scoliosis in 2018.
Darcey’s Scoliosis journey began in 2018. We noticed something wasn’t right with her back. X-rays confirmed the next day she had a 37 degree curvature. 4 months later we saw a consultant and her spine was 52 degrees. Darcey wore spinal plaster casts for 3 months at a time for a couple of years.
Darcey’s spine stayed between 50-52 degrees. This wasn’t good and being in a plaster jacket wasn’t fun for a child or very comfortable in the heat. Surgery is also considered at 50 degrees at 5 years old, meaning the prospect of two lots of extending rods in Darcey’s spine and fusion.
Realising, with X-rays often, that Darcey’s spine was not improving with the treatment from the Nhs, we decided to try out a Gensingen brace, a back brace with a private provider. With good compliance wearing the brace 23 hours a day advice suggests this brace should help Darcey’s spine and hold off surgery at least for some time.
Darcey’s spine is improving constantly by wearing this brace. A recent Eos scan (low radiation X-ray) showed Darcey’s spine at 31 degrees. This is amazing news and we hope Darcey’s curvature continues to improve. Darcey is now going to be hitting some growth spurts in the coming years which can be a worrying time.
The aim is that when Darcey is 16 she will be down to around 20 degrees and holding and hopefully avoid any surgery In the future.Should Darcey need surgery at any point we don’t know if it will be available on the NHS.
We are grateful to be on this journey. Darcey has suffered a rough journey but the road ahead is now looking brighter as she continues to wear her brace and we are so proud of our brave little girl.
Thank you
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