Just4Children are fundraising to pay for a pioneering surgical technique to treat our Lily-May’s severe scoliosis.
Our daughter Lily-May is aged 13 from Maldon in Essex. She has unexpectedly and suddenly developed severe scoliosis. She is in awful pain, she finds daily activities challenging and is suffering from dizziness, nausea, tingling of the hands and feet and spasms.
Treatment for her double curvature in the U.K. is complete fusion in the thoracic spine and fusing 4 of the 5 lumber vertebrae with rods and bone grafts, effectively turning the moving spinal parts into one solid inflexible bone.
We have been advised of a new surgery developed and FDA approved in America that uses a non-fusion technique to straighten the spine by applying internal tethers. For this to work patients have to meet strict criteria, particularly for bone growth (our daughter is ideal skeletally very immature, measuring Risser 0/1 and Sanders 3), while she is also pre menses which is another restriction and although her curves are larger they still fall within the clinical guidelines. This technique is much less invasive, carries fewer risks regarding blood loss and paralysis, has a much faster recovery time and as no parts are fused it doesn’t appear to cause degenerative disc disease. But the biggest appeal is her back will remain intact and moving as intended with all vertebrae free to bend- she will retain almost all flexibility and movement.
This amazing alternative surgery is authorised at St George’s in the UK but only for privately paying patients. We are travelling to Germany to a top spinal paediatric surgeon who will perform the surgery.
Our daughter loves dance and sport and is a grade 4 competitive dancer. Lily-May also enjoys ballroom dancing, netball and swimming.
We want to fix the damage this terrible condition has caused but do as little harm as possible, so she can continue to do all things that brought her joy before. Without surgery the curve would progress quickly and affect internal organs and impact quality of life, movement and life expectancy. Surgery must happen to give Lily-May give the best possible outcome and quality of life.
Thank you
