An hour’s drive was far too long to be away from our son

At nine years old, Connor underwent world-first pioneering soubak surgery in Sheffield. Read his mum's experience of staying at Magnolia House

When I was told that my son, Connor, would need pioneering surgery at a hospital far away from home, I was worried that we wouldn’t be able to be close to him. But thanks to The Sick Children’s Trust, we were right by his side.

My husband Marios and I had known for some time that Connor would need major surgery at a young age after he was diagnosed with a condition called scoliosis, which is the curvature of the spine. By the time he was nine years old, his spine had curbed to 96 degrees. As a result, Connor underwent world first pioneering spinal surgery. Nothing can prepare you fully for your child undergoing major surgery and then the recovery afterwards. But we didn’t have to cope with it alone as The Sick Children’s Trust was there to support us through it, practically and emotionally.

Connor had reached a point where the curvature of his spine was so bad that it was compressing his lungs and making it difficult for him to breathe. It was awful because he just wanted to run around and play with his friends, but he often got out of breath quickly and constantly felt achy.

The operation would take place at Sheffield Children’s Hospital, an hour away from our home in Castleford. An hour felt far too long to be away from our son after such major surgery, so we called the hospital to see if anything could be done to keep our family together. There was something. A ‘Home from Home’ run by The Sick Children’s Trust called Magnolia House, free accommodation supporting families with children at the hospital. It sounded amazing and we felt so lucky that a room was available for us on the day we arrived at the hospital.

“What mattered was that Connor knew we were there. We’d told him all about the ‘Home from Home’, and he said how much better he felt knowing that one of us was always close by.”

As we kissed Connor goodbye, we couldn’t help but worry. He was about to undergo a ‘double-trolley’ operation, during which the doctors would insert six expanding rods next to Connor’s spine. The maximum that anyone has had put in previously was four. I had to keep reminding myself that despite how scared I was, Connor would be so much happier afterwards. He’d be able to run around and play sports without feeling exhausted.

Being at Magnolia House made all the difference to our family. Connor’s surgery went well and because we had a room so nearby, we could be with him for every step of his difficult recovery. Some nights we were both there, and sometimes we took it in turns to stay. But what mattered was that Connor knew we were there. We’d told him all about the ‘Home from Home’, and he said how much better he felt knowing that one of us was always close by.

Magnolia House was somewhere we could cook proper meals, eat together, and relax when we needed a break from the hospital to recharge. Not only that, it lifted the financial burden of having to try to find somewhere to stay. Looking back, I can’t imagine what it would have been like without The Sick Children’s Trust – I’m not sure how we would have coped either emotionally or financially.

We were amazed at how quickly Connor recovered after the operation. He found it difficult to walk and especially to sit up but he was determined. Once he was discharged from hospital, we carried on his physio at home and he was able to go back to school just nine weeks after his operation. Now, not only is he running around with his friends, he’s also swimming, kickboxing and learning karate. Sometimes I try to remind him to slow down but there’s no chance! He’s so happy to be able to do all these things without getting out of breath that there’s just no stopping him.

We’re so thankful to The Sick Children’s Trust for its support and we wanted to give something back so, last year, Marios and friends completed a ‘Tough Mudder’ to raise money for the charity. It meant so much to us that our friends joined Marios in this challenge as they were very supportive to us all. Connor has also done a Junior Warrior too! I really want more people to know about The Sick Children’s Trust, as well as Connor’s condition, so I’ve been telling lots of people about Magnolia House and how much it helped us. I can’t imagine what that time would have been like without The Sick Children’s Trust and I hope that many more families can receive the same amazing support that we did.

Michaela Demetriou, Connor’s mum

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