Earlier this year, we joined forces with Tŷ Hafan (Wales' other children's hospice down in South Wales) to ask the children, young people and families in our care what they needed to live the best life they can. The responses of 133 families created a special report - Our Lifeline - which you can read here.

Bedwyr's mum Nerys took part in our survey to help shine a light on what it is like to have a child with a life-threatening condition in Wales in 2020.

She feels, without a doubt, that Tŷ Gobaith is a lifeline for many families like hers and that more care is needed to help more families.

Bedwyr was diagnosed with the genetic condition Coffin-Siris syndrome two years ago. The condition causes significant learning disability and is extremely rare with just 200 children diagnosed worldwide.

For Bedwyr, who is now five years old, it also means he finds it difficult to swallow so needs to be tube fed for all liquids, has respiratory problems and has no language.

That doesn’t stop him communicating though,” says Nerys. “He communicates a lot through actions, such as taking you to the kitchen to the cupboard where his snacks are kept! He is a right little monkey!

Milestones

Nerys and husband Gavin, from Llanrwst, were convinced something was not right with Bedwyr’s health as a baby. Their little son did not seem to be reaching the same milestones as other babies.

At Baby Club he couldn’t hold his head up like other babies his age, and he began to lose a lot of weight and made gurgling noises when he fed, but our health visitors said everything was fine. Eventually I phoned the paediatrician myself to ask for help. I was told to take him to hospital and he has been tube fed ever since.”

Looking after a child with a condition like Bedwyr’s is a full time role, and Nerys can fully appreciate why so many families said that respite care from the hospices is absolutely vital.

It’s the little things you really look forward to that other people can take for granted, like being able to sleep at night, or sit down and eat a meal in peace even if it is just beans on toast, or just to have a cup of tea,” she says.

It’s horrific going without sleep. Bedwyr has always co-slept with me which means I don’t get much sleep at all. If anything happens it is always in the middle of the night. Emergencies and rushing to hospital always happens at 2am in the morning, never in the afternoon.

Financial worries are another huge concern for families. I know of families who have felt they needed to take out loans because their child has to go to hospital and they aren’t sure how they can afford to get there or to feed themselves.”

Support for the whole family

Tŷ Gobaith’s support for the whole family is also important to the Davies’s, and that has been even more important during the Coronavirus pandemic.

Because of Bedwyr’s condition we shielded as a family,” Nerys explains.

Bedwyr’s older brother Gethin had enjoyed doing activities with the sibling support team in the past and having fun with children in the same boat as him. That became a ‘virtual’ service online and by phone during the lockdown and we really appreciated it continuing.

Gethin saw the news and knew what was happening with Covid and that we were sheltering. He stopped going out and he didn’t want to go back to school because he was convinced he would bring Covid home and literally kill Bedwyr.

Mark, one of the Tŷ Gobaith counsellors, phoned him and he had a good chat with Mark every week, I don’t know what they said but whatever it was really helped Gethin. If it wasn’t for Mark he wouldn’t have gone back to school.

So many people don’t realise that children’s hospices aren’t wholly funded by the Government. If the hospices had more funding that would mean more care for more families.

Respite is so important for us as parents physically and mentally because without it families end up in crisis. That will end up costing social services and health much more to deal with. Tŷ Gobaith really is our lifeline."