LITTLE Nathan Jenkins has a tragic secret – he has a devastating genetic disorder that has left him facing an uncertain future.
The 15-month-old has been diagnosed with suspected Chromosome Deletion Syndrome, which could see him have developmental problems, severe muscle spasms and visual impairment as he gets older.
He is now undergoing a series of pioneering tests at the Centre for Life in Newcastle as medics try to understand more about his illness.
And dad Desmond, from Castletown, fears the condition may have been passed down from his family – his four-year-old daughter Chloe has cerebral palsy and dystonia.
“The doctors are looking into a genetic link with the condition,” said the 40-year-old.
“I didn’t know until recently, but there was some problem in my family. I have a cousin who has similar difficulties. We’re still in the dark as to how it came about.”
The family are undergoing tests at the Centre for Life, an international hub for cutting-edge research in genetics and the diagnosis and management of inherited muscle diseases.
“We’ll just have to wait and see what happens,” said Desmond.
“It was the same with Chloe when she was born.
“The doctors just didn’t know what the problem was.
“She underwent all sorts of tests and, to be honest, we still don’t know exactly what is wrong with her.
“It was a complete shock when we found out that Nathan was having problems.
“Nothing showed up in the scans. It was about a year when we started to notice he was having difficulties.
“We were having problems feeding him and he was crying a lot.
“But when you look at him, he appears to be a normal, healthy baby boy.”
Mum Beverley Armstrong, 31, said the family are coming to terms with the ordeal.
“We’ve had so many tests, it’s difficult to keep track of things sometimes,” she said.
“Nathan has been to Newcastle, but Chloe seems a bit more used to it all.
“She’s been through so much, but she doesn’t seem to mind giving blood for the doctors any more.
“Although she’s quite often a bit baffled by everything, she just gets on with it.”
Beverley, who is also mum to Caitlin, seven, and Brandon, six, is full-time carer to the children.
“It can be a bit stressful for us all at times, but we’re doing well,” she added.