Jilly's Hospital Journey

When Jilly (now 8) was three months old, her family noticed something wasn’t right. She couldn’t play with her toys and would often hold her neck to the side. Then, she developed a big hump in her back. 

Mum Karen asked for a referral to the children’s hospital. 

She says: “Jilly had a 41-degree curve in her back and was diagnosed with severe neuromuscular scoliosis. She was given a brace – a spinal jacket – which helped her to sit up by herself, something she couldn’t do before. 

“But over time, it became less effective. Although she could sit up in her jacket, she was never able to walk. She got her wheelchair at 3-years-old. 

“By last year, her spinal curve had progressed to 68 degrees and was starting to affect her internal organs. She needed surgery and had her first operation in October, where she had a growth rod inserted. 

During our hospital stays, ECHC’s Hub has been amazing. It’s wheelchair accessible so gave Jilly somewhere she could go every day, helping to get her out of her hospital room and keep her busy and entertained.

Karen, Jilly's mum


“Her surgeon initially wanted to wait until she was at least 13 to give her a full spinal fusion as this is major and complex surgery, but when the one growth rod proved ineffective, we couldn’t wait any longer. In February this year, she had two rods with 12 hooks and screws inserted, and part of her spine fused. 

“It’s been an emotional rollercoaster to say the least. After her first surgery, she was scared to take her medication as there was so much of it, she was sore and tired all the time and didn’t want to do much. Her second was better, and she was able to be more up and about in her wheelchair.

The Hub

“During our hospital stays, ECHC’s Hub has been amazing and we would recommend it to all families. It’s wheelchair accessible so gave Jilly somewhere she could go every day, helping to get her out of her hospital room and keep her busy and entertained. She loved making slime, going to the disco party and especially meeting Sylvie the Therapet! 

“The Hub and Youth Work team also really supported Jilly’s older sister Katie, who hung out there every single day of our 17 day hospital stay. She also attended ECHC’s Youth Group on a Monday evening. Katie celebrated her birthday while we were in hospital and the Hub team made it extra special for her.  

Although Jilly has now been home for two months, she still has a long way to go in terms of recovery. I’m not allowed to lift her, so she needs to be hoisted between her hospital bed in our living room and her wheelchair for the next nine months. 

“Her x-rays are looking great though, and she won’t need another operation. We are incredibly thankful to her surgeon Thanos and everyone at the RHCYP. Without them, we honestly don’t know where we would be today. 

“Jilly will have follow up hospital visits for many years to come, but knowing The Hub is there so we have somewhere to play, chat and chill out after appointments makes visits so much easier. Jilly and Katie are already super excited to see the ECHC team again in July!” 

The Hub is our home-away-from-home within the hospital – a place for families to go for a break from the wards for activities, a chance to offload or just a hot cuppa and a biscuit.