On Thursday 20th December, employees from CET’s Castle Donington site hosted a bake sale and raffle, to raise money for Lily’s Fund.
Lily Ruby, who is the daughter of CET’s Operations Director Ray Ruby, was diagnosed with Idiopathic Scoliosis two years ago at the age of 9, meaning that she has 2 curves in her spine making an “S” shape. Although she needs to wear a brace for 23 hours a day to try to control the curvature, her condition is progressing at an alarming rate.
Ray Ruby said: “We noticed Lily had a curvature in her spine; it wasn’t something we’d seen before, so we made an appointment to get her checked right away. When the doctors explained that it was Scoliosis, we were surprised to learn just how common this condition is. It’s something we’d heard of but wasn’t something we knew an awful lot about.
“The brace that Lily has right now also shows the limitation of movement she will have if we opt for the proposed NHS procedure. We’re seeing the profound effect it’s having on her, so we’ve been looking at alternatives.”
Although Lily is patient and understanding, the condition has had a profound effect on Lily’s day-to-day. She finds it hard to do the usual childhood activities, such as trampolining, gymnastics and horse riding; even walking her 2 Golden Retrievers is now restricted, due to back and hip pain.
Lily’s Fund was established to help raise the funds for Vertebral Body Tethering (VBT) surgery. The Ruby’s have consulted with doctors in Germany, who would like to perform Lily’s surgery once she is 12 years old in 2019. However, if her condition worsens sooner, she would need immediate treatment.
Although there is no cure for Scoliosis, VBT has an 80-90% success rate for patients and will allow Lily to have more freedom of movement, through a less invasive surgery.
Ray continued: “We feel there is a lot of work to be done to raise awareness of this condition and the VBT treatment. There’s still a long road ahead for Lily, but we’re thankful to everyone who’s donated so far and look forward to the year ahead.”
The aim is to raise £45,000, which is the cost of the treatment. You can find out more about Lily’s story and donate by visiting the Go Fund Me page.