Story by Claire Elliot
BRAVE Aidan Pert desperately needs a new kidney as he battles a rare and deadly disease that affects only three other people in Britain.
The 12-year-old suffers from prune belly syndrome, which meant his kidneys were failing before he was even born.
His bladder is twice the size it should be and he has no abdominal muscles - so even a punch in the stomach could cause severe internal bleeding.
Aidan has spent much of his childhood in and out of hospital battling the condition and hope finally came in 2009 when he received a new kidney from his father.
But the life-saving act, which was supposed to improve his health ahead of starting secondary school, left him clinging to life when a blood clot in transplanted organ made his condition worse.
Now suffering from end stage renal failure, he needs a new kidney more than ever.
Devastated dad Ricky, a 41-year-old store worker, said: “His body was changing and the transplant was pre-emptive rather than waiting until he desperately needed it. But unfortunately it escalated the problem.
“It was a tragedy. I was pretty much the best match he could get. Now it will be more difficult to find a match. But our fingers are crossed that a donor comes up.”
Aidan, who has been on the transplant list for 15 months, now depends on peritoneal dialysis– a form of renal replacement therapy - at home eight hours a night.
He must adhere to a strict regime of medication, taking eight different drugs up to three times a day to keep the disease in check.
He is also on permanent antibiotics, as a common cold could leave him seriously ill and he needs an injection – given by his mum Gill - once a week, to boost his red blood cell levels.
But that does not stop the happy-go-lucky youngster from enjoying his favourite science classes at school and archery at the weekends.
As he has no abdominal muscles protecting his organs, however, playing physical sports and rough and tumble with his seven-year-old brother, Sam, is strictly forbidden.
Mr Pert said: “He needs to be careful because he has no abdominal muscles. A blow hard enough would cause internal bleeding.
“His brother knows not to punch him in the stomach. They’ll sit on the sofa and poke at each other but there’s no rolling down the stairs or fist fights.”
He added: “Aidan has grown up with the condition and he copes very well.
“He is a very determined young man and I think that’s helped him through all the hard times.”
Aidan’s condition is deteriorating all the time and following his recent move to secondary school, even walking between classes can leave him feeling drained.
But as he now has his own antibodies as well as those of his father in his system following the failed transplant, his parents know he could have a long wait for a new donor.
And they are worried that the longer it takes to find one, the worse his condition will get.
Mrs Pert, 36, who gave up her work as a cleaner to care for Aidan, said: “He still has 10% function of one kidney. But his blood test results are deteriorating all the time. He’s growing so it’s more work for his body.
“We thought the transplant would be a new start for him. But he was only out of theatre for an hour and he was screaming in agony.
“It was horrendous. My husband was in another hospital, and no one could say what the outcome would be. It was the worst moment of my life. We just had to take every day as it came.”
Within two hours of the transplant at Glasgow’s Yorkhill Hospital, Aidan was rushed him back in to theatre for another nine hours to remove the kidney, flush out the clot, which had burst in the renal vein, and transplant the organ back into his body.
But he lost so much blood he needed more than 10 blood transfusions, spent the next three weeks fighting for life on a ventilator, and was placed in an induced coma to let his body recuperate.
Now the family is worried that they will face further trips to Glasgow unless Aidan gets a new kidney soon.
Mrs Pert said: “The peritoneal dialysis that he gets at home is working for him just now but there is only so much the machine can do.
“He’d then have to get haemodialysis (which involves passing blood from the body to an artificial kidney machine) three times a week at Yorkhill. It’s the only hospital in Scotland that does this. Then we’d have to move down there because we couldn’t possibly travel three times a week down to Glasgow.”
But Mrs Pert admitted that while she and her husband know their son desperately needs a new kidney, they are dreading the call for fear that their son is left fighting for life prematurely in intensive care again.
She said: “He needs it and it will make life so much easier for him. He can’t do sleepovers like his friends, he’s got to come in early to go on the machine, and he takes quite a lot of medication.
“But we are tense about another transplant because of what he has been through. But he’s such a great kid and he just gets on with it.”
Mr and Mrs Pert, who are both on the organ donor list, now hope to raise awareness of the need for organ donation in a bid to help their son and other patients like him.
Aidan Pert with dad Ricky
Aidan Pert fighing for life in intensive care