It was the summer of 2017, when Ruby was ten, that I first noticed a difference with her spine. The two of us were out having a girly shopping trip and I couldn’t understand why the clothes she was trying on weren’t fitting. I asked if I could have a look at her back and I saw a ‘hump’ on the right side that had seemingly come from nowhere.
This was the year that the Merseygirls had been on Britain’s Got Talent and one of the dancers had attracted a lot of attention as she had scoliosis (a curved spine). I had never heard of the condition until then, but I immediately thought this must be what was happening to Ruby. At a GP appointment my fears were confirmed, and we were referred to Leeds Children’s Hospital.
Ruby was diagnosed with idiopathic scoliosis. There was no reason why it had happened. We were shocked to see the X-ray, her spine had turned into an ‘S’ shape and was twisted. Without correction, it could crush her organs.
Ruby was offered a spinal fusion, a lengthy procedure that would involve having a bone graft to fuse the vertebrae together and metal rods inserted to straighten the spine. We were devastated and Ruby was in tears. It took a lot of explaining to get her to agree to the surgery but deep down she knew it had to be done.
“Ruby was going to be in surgery for up to 12 hours, and we didn’t know what to do with ourselves. I was too scared to leave the hospital.”
Trying to plan who would be with Ruby, and when, was a logistical nightmare. We knew someone had to be with her, but we needed to work out how we would travel back and forth to the hospital from Holmfirth, which is a two hour round trip, several times a day to make sure her little sister, Katrina, was looked after too. We noticed a poster for Eckersley House and I contacted Jane, the House Manager, about a room. At first they didn’t have one available for us, so we were thrilled when she rang and offered us a room on the day of Ruby’s surgery.
Ruby was going to be in surgery for up to 12 hours, and we didn’t know what to do with ourselves. I was too scared to leave the hospital. But when we spoke to Jane and we were offered the room we went straight round as we knew we were only a couple of minutes’ walk away. I cannot describe the relief and gratitude at having somewhere to go. Knowing that we had somewhere to sleep, be there by Ruby’s side at a moment’s notice, have proper meals together as a family in the dining area and a chance to shower made an incredible difference to our well-being.
After nine very long hours we finally received a call to say we could see Ruby in the recovery room. The surgery had gone extremely well and after a week she had learnt to walk again. She was ready to go home and so we passed our room at Eckersley House onto the next family in need.
“I cannot describe the relief and gratitude at having somewhere to go. Knowing that we had somewhere to sleep, be there by Ruby’s side at a moment’s notice, have proper meals together as a family in the dining area and a chance to shower made an incredible difference to our well-being.”
Ruby had to have a year off from all physical activity – she had been very active prior to her surgery so this was a difficult time. She no longer needed a wheelchair, was back at school and felt fine but wasn’t allowed to participate in anything physical as her spine would take 12 months to fully fuse.
When she finally was given the go ahead she started again with swimming, cycling, netball, dance and all the things she loved. We encouraged both her and her sister to start taking part in park runs on a Sunday morning, but she really wasn’t keen as running isn’t her thing. It was a battle to get her there, however to spur herself on she decided she would turn it into fundraising for The Sick Children’s Trust. Now she wasn’t just running for herself but also for a cause she truly believes in.
She is currently at over £400, way over her original target, and even though she’s missed a few along the way, she has managed 18 runs (so far) and I couldn’t be prouder.
Catherine Firth, Ruby’s mum.
