We’ve been coming to St Oswald’s now for a year and we honestly haven’t looked back. Dylan was born with Larsen’s Syndrome, a rare genetic disorder that impacts the development of many of the bones in his body. So from a young age, he spent a lot of time in the Hospital. At around 8 years old, we took Dylan to hospital and found he needed another surgery. He actually rode his bike down to the operating room that morning like any other little boy, but then he woke up afterwards paralyzed from the neck down.
It was awful and so unexpected but he was a fighter. After six months of intense physio, Dylan could move again and walked out of hospital. It was only over the next few years things started to get worse. We notice his spasms were getting out of control and we were having more hospital visits each year.
When Dylan turned 15 he went in for another big operation. Two days later, both of his lungs collapsed from the stress, so once again was rushed into another surgery. Dylan came out of the hospital fully paralysed, and unfortunely this time, he couldn’t reverse the paralysed state his was in. Not long after, Dylan got an infection but due to the weakness in his body, he was struggling to cough to clear his throat. That’s when we had to get a Tracheostomy tube fitted.
Then St Oswald’s entered our lives. Dylan now requires 24 hour care and the hospice has been a lifeline to us. It’s the little things like being able to pop to the shops, I can go out for food and have a few drinks with my husband without having to worry about who is looking after him.
The main benefits though, are for Dylan. The Hospice has given him his independence back. He loves coming and never wants to leave, he has so much fun there and it’s really made a difference to his quality of life too. There’s always something going on and he can barely sleep through excitement.
For me, I love running and run as part of a running group. The Great North Run gives me a challenge to say that I can do it. I did my first ever GNR when Dylan was in hospital as a baby, it was something to do that I could control whilst he was in hospital. Since then I’ve done a few, but this year, I really wanted to raise money for St Oswald’s. They’ve done so much for us and so much for Dylan that I don’t know how to say thank you, so hopefully doing this will help raise some much needed funds for the team. I’m aiming for £400 altogether so wish me luck!