Devoted South Shore mum Barbara Hall says she will be making the most of every moment with her disabled son Tristan, after being given the devastating news his kidneys are failing.
The Gazette has covered Tristan’s story since his first Christmas and first birthday the following month – milestones doctors had predicted he would never see.
The seven-year-old was born with rare genetic disorder, Edwards’ syndrome – which affects the major systems of the body, including heart and digestive tract and causes delayed growth and development.
He relies on Barbara for 24/7 care.
Children with Edwards’ Syndrome suffer from frequent chest and urine infections – his family have always had to be extremely careful, as he is so susceptible to infections.
Only five per cent of babies with Tristan’s condition survive past their first birthday.
But the little lad defied doctors’ expectations and kept hitting big milestones – such as his first tooth, celebrating his seventh birthday and using a standing frame.
Sadly, at the end of last month, Barbara – and Tristan’s brother Wayne and sister Linda – were given the devastating news they knew one day might come.
Doctors said Tristan’s kidneys had started to fail and he might only have weeks.
Barbara said: “It doesn’t seem like it can be real, as he looks so well. It’s a line I knew would come, but I never wanted to come. It doesn’t make it any easier. The doctors told us after a routine blood test, there was a rapid, unexpected decline in his kidney function. They gave him weeks and anything else would be a bonus.
“They are taking blood tests every 10 days to monitor his levels – they have not decreased as rapidly since, so we don’t really know the timescale.
“He’s getting a bit tired – but he still smiles all the time.
“I was shocked, because he had been doing so well, it was unexpected.
“There are really conflicting emotions. I feel lucky to have had the time with him I’ve had.
“But it would never be enough and I don’t want it to end. When he was born, they said he would never be able to respond and so on and he just kept proving everybody wrong.
“He’s had a happy life, a good quality life and we’ve had such great experiences.
“We’ve been on holidays, visited lots of places and he lights up any room with his smile. When anyone meets him, he just melts their heart.
“There is a battle of emotions – at times I feel bitter this happened to us and it wasn’t picked up on a scan.
“But I would never change him for the world. He has changed the way we look at things as a family, he’s made me a better person.
“He’s made me more compassionate and understanding, shown me the trivial things in life don’t matter.
“And he’s inspired me to want to help people.”
Tristan and his love of sensory rooms inspired Barbara to set up Tristan’s Light House in Lytham Road, South Shore, to help other children.
Barbara has created a wall full of photos, newspaper clippings and other memories in a room at home, showing each year of Tristan’s life.
She added: “We are trying to do as much we can – go to the zoo, the Sea Life centre, do all the things he loves – and make the most of every moment.”