Jamie Hanlon was not expected to live past the age of five.
Two years ago doctors told him they could do nothing more to help, as he suffers from X-linked agammaglobulinemia – a genetic condition which means he cannot make blood cells to fight infection.
The condition affects his lungs and he has been diagnosed with level two respiratory failure.
Today, at 43, he has a lot to be thankful for.
“My parents were told I wouldn’t live past five, and I proved the doctors wrong,” he said.
“I have been very ill as a child and I’ve been in and out of hospital with all sorts of infections. Now my condition is so advanced I could end up in hospital tonight without any warning.”
Between September 2010 and January 2011, Jamie was in hospital 10 times with chest infections.
Last year, Jamie started a new therapy which takes the carbon dioxide from his lungs and replaces it with the air from his surroundings.
Since he started, he has been in hospital just three times.
He said: “It’s scary to think about what might have been, but I am just happy that there is someone there who cares enough about me to go that extra yard.”
Those caring people are at Trinity Hospice, where Jamie, of Marton, was a regular patient at its day unit.
“The people there, the staff and the nurses, are absolutely amazing,” he said.
To say thank you he now volunteers for the hospice on Low Moor Road, Bispham.
He said: “What I do is not enough to repay what these people have done for me, but I can’t do any more because of my health.”
Jamie is backing The Gazette’s Hospice Heroes campaign, which aims for raise £200,000 for much needed improvements at both Trinity Hospice and Brian House children’s hospice.
The money we raise will be put with a grant of £280,000 from the Department of Health to create single rooms for privacy and dignity at Hospice.
At Brian House work will be done in the kitchen, bedrooms and living area to make the spaces more appropriate for children’s needs.
Jamie said: “Without campaigns like Hospice Heroes, Trinity would not be here.”