Darcey Donaldson is aged 5 from Ware in Herts and is diagnosed with Scoliosis. Just4Children is fundraising for regular treatment to help her back and improve the quality of her life.
This is Darcey. She is 5 years old and in March 2018 was diagnosed with infantile idiopathic scoliosis. By the time Darcey had any treatment her condition had become severe at 52 degrees.
Scoliosis is a sideways curvature of the spine that occurs most often during the growth spurt before puberty. It can be caused by conditions such as cerebral palsy and muscular dystrophy, but the cause of most Scoliosis is unknown.
Darcey’s Scoliosis isn’t improving whilst having treatment from the NHS; it is just merelyholding the curve.
Darcey is nearing a growth spurt 5-7 years and then again at puberty 10-13. Having a growth spurt is when Scoliosis tends to worsen. With Darcey’s spine being at 52 degrees, surgery is considered at 50 degrees. If her spine does deteriorate we will be heading for Magec Rod surgery. This will then need replacing when they run out of room, followed by a second set of Magec Rods, then fusion when she has stopped growing. This is 3 major operations on Darcey’s spine and extra operations maybe needed too.
Some people have fusion and still end up having several surgeries. Equally Magec Rods they do have a very high failure rate.
We are starting private treatment with London Orthotics Consultancy to have a Gensingen Brace, something the NHS doesn’t have to offer. Without this new hope surgery is pretty much inevitable for Darcey in the future. And Darcey’s is very severe and too far gone as such for the NHS to save without major surgery.
Numerous people I have spoken to are getting results within a few months of being with the private clinic. Fingers crossed, Darcey’s back will start to improve. I’m hoping this will help my little Darcey on her way. Darcey will need a new Brace every time she grows 5cm – and they range from £2,700-£3,400 including therapy.
The aim is to get Darcey down to around 20/25 degrees when she is 16 and stopped growing. She will then not need surgery, but instead have therapy in her adult years. Please,if you can donate and can help my little girl we will be so grateful.