Thomas

“When your child is in hospital, and they’re in pain, you want to do everything you can to help them relax and be comfortable. Being able to do that together as a family in a calming environment is really important.

That’s why I want to share my story with you and urge you to support The Grand Appeal’s Patient Hotel.

My son Thomas is a cheeky 11-year-old who loves engineering, gardening, computer games, and being outside. Since he was a toddler, Thomas has always seemed to suffer from more aches and pains than other children. Doctors didn’t seem concerned until last year, when Thomas fell off his scooter and broke his leg.

After fracturing his other leg shortly after, x-rays revealed Thomas had multiple fractures in his spine. It felt like we were watching him become more and more fragile before our eyes.

The specialists at Bristol Children’s Hospital told us Thomas had Brittle Bone Disease. It was a shock, especially knowing this condition will likely affect Thomas throughout his life.

His diagnosis has had a huge impact on not only Thomas but us a family. Seeing him go through the pain of so many fractures and the strain it has had on his day-to-day life has been upsetting for us all.

Thomas went from being a really active boy to a full-time wheelchair user in a matter of months. He’s even had to give up his passion for cycling, for now.

After the initial diagnosis from Bristol Children’s Hospital, we were offered an intensive therapy week to help Thomas begin to recover from his multiple fractures and become more mobile. This included physiotherapy and occupational therapy sessions.

When we came up for Thomas’s therapy, the team were hopeful he would be able to stay in the hospital because we live three hours away in Cornwall.

However, on our journey we were told a bed would not be available.

We had the option of postponing or finding accommodation in the city. We were desperate not to have to rearrange, as Thomas needed this treatment to get on the road to recovery. So luckily, we were able to find a last-minute accessible hotel, but it was an unexpected expense. I know there will be other families who have no option but to not attend the treatment their child desperately needs.

Staying in a hotel meant we had to make multiple trips back and forth across the city to hospital every day, which was stressful for Thomas as a wheelchair user. As we didn’t have any kitchen facilities at the hotel, it also meant that we had to eat out for most meals, an additional expense. The Patient Hotel would have made such a difference.

This pioneering project from The Grand Appeal would have helped us enormously, giving us a place to stay as a family so that Thomas could continue his vital therapy and rehabilitation in a calm, welcoming space close to the hospital before returning home. For families like ours travelling from across the South West and South Wales, The Patient Hotel will mean so much. 

We don’t know how Thomas’ diagnosis will continue to affect him in the future, but throughout it all he has stayed positive, still smiling, and determined to be as independent as he can be.

Please support The Grand Appeal’s Christmas Appeal and help more children like him.”