Joshua Turpin has spent his whole life defying medical expectations and later this month will be celebrating the milestone moment he was never expected to see.
And while his family knows there are many challenges ahead, his 13th birthday will be marked with a huge party, which will also double as fundraising event to support a charity which has helped them over the years.
Joshua was born with a serious heart problem and a condition known as Digeorge Syndrome, with little prospect of survival.
However, a 15-hour operation helped to alleviate some of the most pressing problems with his heart, though medics have continued to express pessimism about his long-term prognosis.
His mum, Shelley, said the immediate concern when he was born had been his heart, but as he got older, the Digeorge Syndrome had started to become more problematic. That is a condition with many different symptoms and in Joshua it affects his immune system and means he has to be on permanent medication.
But doctors have also now diagnosed a spine problem, which means in the next few years it will grow in a distorted way and may start to crush some of his organs.
That would mean the prospect of a 20-hour operation, but it remains unclear whether his heart would be able to stand the stress of that procedure.
Despite that uncertainty the family is determined that Joshua, who is a happy youngster, has a birthday to remember.
His mum also wants to use the opportunity to raise money for the Max Appeal charity, which works with those affected by Digeorge Syndrome and has provided much-needed support for the family during difficult times.
“He is having the biggest party you can imagine. We are inviting people who have known him from birth and those who are involved in his life now,” she said.
The party will take place at the Paradise Farm pub in Clayton Lane from 6pm on June 28 and will feature a range of attractions to help raise money for the charity.
“The prognosis he has now is the same that he had 13 years ago,” said Shelley, “Doctors don’t have a clue about what is happening. He looks perfectly normal, but is classed as a life-limiting child.”
As Joshua gets older he has begun asking more questions. “He gets up every day with a smile on his face. He knows he has problems, but I don’t think he understands how bad they are,” said Shelley, who lives in Bradford Road, Clayton.
Anyone who is abel to help with donations or raffle prizes can contact her by e-mail at MrsT00000@gmail.com.