What started as a routine check-up led to our son Dylan being hospitalised for 6 ½ months when he was just 14 months old. He suffers from a rare condition called Larsen syndrome in which his bones do not grow properly. He had to have a tracheostomy and a spell in intensive care, at Newcastle General Hospital. I stayed in the ward with him for the whole time. My husband David wasn’t able to stay but he visited frequently even though it took two buses each way.
Dylan, who is now seven years old, has been in and out of hospital ever since, and in May this year he had a seven hour operation to have the bones in his foot broken and realigned. A frame was attached to the bones in his foot with a screw which we have to turn to help realign the bones gradually. That operation was at Sheffield Children’s Hospital, and as its three hours away from where we live, we were delighted to be able to stay at Treetop House.
David and I wanted to spend as much time as possible with Dylan and it was amazing that The Sick Children’s Trust could provide us with a secure and comfortable place to stay just minutes from his bed. Where possible we tried to make sure Dylan was never alone, so one of us would be on the ward while the other was in Treetop House. At night I’d sleep on the ward, and then go back to Treetop House to shower and freshen up while David sat with Dylan.
Even though Dylan’s used to being in hospital, he still finds it frightening, especially before an operation, and so he needs us to be with him as much as possible. Having the direct phone to the hospital was especially reassuring. If Dylan wouldn’t settle or needed comforting it was fantastic knowing that we were on call and were never more than a couple of minutes away. I would say that having us so close to Dylan definitely helped him recover; he was home a week after a major operation.
The actual house was lovely, it didn’t feel like a hospital, it was so much cosier and friendlier. It also had cooking and laundry facilities so we were able to visit the local supermarket and stock up on food for the week. At mealtimes it was quick and easy to just pop something into the microwave and it saved us money on expensive hospital food. Having our own ‘Home from Home’ also meant that my family were able to visit Dylan from Newcastle, and I could prepare lunch for them. As Treetop House is situated within the hospital Dylan was also able to visit us - in fact he liked the house so much he didn’t want to go back to the ward! He liked the playroom which is equipped with toys as well as a television and computer.
The Sick Children’s Trust staff were very friendly and I really appreciated all the practical help they gave us. It was also good to have other parents in the house. Even though they had problems of their own, they were all supportive and I found it comforting to be with people who understood what we were going through. I struck up friendships with two parents at Treetop House and I am still in touch with them.
Dylan’s operations have been successful and he’s doing well but he will always have Larsen syndrome and face more stays in hospital. We have to visit Sheffield Children’s Hospital once a week at the moment - we stay in hotels the night before as the appointments tend to be at 7 in the morning.
It is so difficult for children when they go to hospital and Dylan has really benefited from having his family around him. I know that Treetop House can be full so I’m really grateful that we were able to stay. I can’t thank The Sick Children’s Trust enough for their support during this hard time.
Victoria Marshall, Dylan’s mum
