TODAY is a big day for little Jack Wilkinson – and one his parents feared he wouldn’t see.
The brave four-year-old has spent the last month in hospital battling a rare disease – but is being allowed out to don a cap and gown for his nursery school graduation.
For his parents, Martin Wilkinson and Keren Burdett, 29, of Sidney Street, Boldon Colliery, the event at Ashfield Nursery, in Stanhope Road, South Shields, will be emotional.
Jack took ill on June 16 and has been diagnosed with atypical haemolytic uremic syndrome (AHUS) – a genetic condition which causes uncontrolled activation of the body’s immune system – and is a one in a million condition in under-fives.
Mr Wilkinson said: “Jack has been absolutely amazing. We thought we were going to lose him.
“His graduation will be the first time he’s been away from hospital in a month and he’s really excited to see all of his friends. I think it’ll be a very emotional day for us.
“In the first two days, he was seriously ill and the consultants told us those days were critical. The main concern was his heart because it was only working at 10 per cent. It’s incredible that he’s come through all of this.”
Jack is due to start at West Boldon Primary School in September.
Mr Wilkinson, 34, a customer service advisor for energy company EDF, said: “We noticed that something was wrong but we thought he just had a tummy bug because he was still his normal self.
“But in the early hours he got worse and we took him straight to A&E at South Tyneside District Hospital. His blood pressure and heart rate were through the roof so they transferred him to the Royal Victoria Infirmary, in Newcastle for observation.”
Doctors gave Jack an ultrasound scan and found that his kidneys were inflamed. Another scan on his heart showed it wasn’t functioning properly and he was transferred to the city’s Freeman Hospital for specialist heart care.
The following day he was diagnosed with AHUS and has been back at the RVI for three weeks.
Jack has had three operations, physiotherapy, and was put on kidney dialysis 24 hours a day.
Now, he is out of intensive care but his kidneys are working at just 30 per cent of their capacity, although his dialysis has been cut down to 12-hour sessions.
The family will have to wait and see if his kidneys improve, or if he will need a transplant.
Yesterday, Jack spend the day with his parents and nanna, Tracey Burdett, looking forward to his special day.
Mr Wilkinson said: “Jack has done so well considering how young he is. Whatever happens now, he’ll need the medication for the rest of his life.
“Anything can bring the condition on – a cold, virus, chest infection, anything can trigger it. We didn’t know Jack had the condition until he fell ill.
“It’s is so rare, we’ve had to learn about it as we go, so we want to raise awareness.
“The drug that Jack needs has only been around for three years and it costs over £3,000 a dose. A friend of mine is going to do the Great North Run for the charity for the condition – The Foundation for Children with Atypical HUS – and we’re looking into ways of raising money too.
“Things are starting to get back to normal now and we’re getting our little boy back.
“The staff at the RVI and the Freeman have just been amazing. We can’t thank them enough for everything they’ve done, and we just can’t wait to see our little boy graduate from nursery.”
One of Jack’s physicians at the RVI, Dr Ben Reynolds, a specialist registrar in paediatric nephrology, said: “AHUS is very rare. In the North East, we have only a handful of cases.”
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