With his beautiful blond hair and blue eyes little Oliver looks a picture of health – but his mum Bethan is only too aware of the life-threatening condition that lurks beneath his happy smiles.

Oliver was born after a normal pregnancy and, for the first year of his life, Bethan had no concerns at all.

“He never liked sleep – I used to joke he was allergic to it! He was quick to crawl and into everything and he was just starting to walk too,” she recalls.

“Then he began falling asleep all the time, and when he wasn’t asleep he would scream for no reason and go bright red. I knew something was wrong but I'm sure everyone just thought I was being a paranoid first time mum.”

Bethan took Oliver to the doctor and to hospital. Each time they were sent home she became more and more worried and distressed.

Life support

Then Oliver had a seizure while they were at a hospital. He was transferred to Alder Hey Children’s Hospital on life support and doctors there discovered he was suffering from a viral infection.

It was a traumatic time for Bethan but, after three months of treatment, Oliver was well enough to return home.

Tragically, his illness has left him with chronic lung disease and kidney problems. To survive, he needs to stay connected 24 hours a day to his own personal oxygen supply and take a whole regime of different medicines.

Leaving hospital with her little son, Bethan was terrified about how she was going to cope. Thankfully, Hope House was there for them both.

“When you are in hospital the staff are great, but when you leave you are completely on your own again. It is scary,” she recalls.

“But someone told me about Hope House and I went to have a look with Oliver and it was brilliant. The nurses are highly trained and know just how to cope with Oliver and his oxygen because there is no warning - one moment he is fine and the next minute he goes downhill really fast.

Heart-breaking

“One day I took him into town in his pushchair and he ended up being ill and on life-support again. Now I am quite scared to take him out on my own and it breaks my heart that he might be missing out.

“But when the Hope House nurses take him out, or when he is with them at Hope House, I know he is safe because they know just what to do. It’s the only time that he gets to do things like run about the park because they are able to run around after him carrying the oxygen cylinder. They even go up and down slides with him – they are brilliant and Oliver has opportunities he wouldn’t normally have.

“During the Covid lockdowns when we were sheltering they are always there too, calling me regularly to check on us and offer help and advice, and even coming to talk through the window in full PPE. They even helped us by collecting all Oliver’s medication and bringing it to us.

“I can’t start to think what life would be like for us without Hope House. They really are our lifeline.”

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