A Derry mother whose infant son has a condition so rare even many doctors have never come across it has called for greater awareness.
Little Caiden Quinton from Carnhill has spent more time in hospitals than at home since he was born 18 months ago with CHARGE Syndrome.
His mother Carrie-Lee Quinton (27) said that the condition has meant her son is beset with health problems, while his physical development has also been delayed.
Carrie-Lee said she wanted to find out if there were other parents of children with the condition out there, while also raising awareness.
Charge Syndrome is a complex pattern of birth defects, but each child’s medical and physical difficulties differ.
When born, Caiden, like many other newborns with CHARGE, was found to have a heart defect and breathing problems.
Carrie-Lee said: “Since he was born there has been a whole load of different things. He had no airways in the back of his nose. So he had to get moved to Belfast. They took him down when he was five days old and opened the airway and kept stents in for five weeks. That was great for about two months and then the airway closed over so they took him back and they put a nasal gastric tube in and he had plasters everywhere. A year today he has that out.
“That was the first big thing. With CHARGE each of the letters stands for a specific thing, the ‘H’ stands her heart and he is missing a valve in his heart, and he has a hole in his heart. ‘R’ is to do with growth development and he has that because he is behind in growing, he is not the size he should be, and he is still not walking or nothing, he is behind in all that. He also has moderate hearing loss.
“It’s really, really rare. Everybody you say to doesn’t know about it. It’s hard if doctors are asking us to explain it all because there is a while lot involved in it.”
Carrie-Lee said she would like to help, and learn from, others families living with CHARGE. “If somebody had a child and they were finding it hard, because it is a struggle at the start as you just don’t know, just to let them know there is somebody out there.
“I have been on-line searching and searching for other families just to see how their wains have come on, because they do go through a while lot.”
A prime example of this was last Friday, when Caiden’s lung collapsed for the second time in three weeks.
“With CHARGE you just try and take things day by day,” his mother said.
Carrie-Lee said it is “hard” when you see other children the same age running around.
“It breaks your heart for him,” she said. “But thank God he keeps bouncing back.
“No matter how sick he is you always get a smile out of him Everybody calls him ‘the Wee Warrior’. He rarely gets his name everybody calls him “the wee warrior”. He always has a smile on his face. He cheers everybody up, so he does.”
Anybody wishing to get in contact with Carrie-Lee can do so by contacting the Derry Journal on 028 71272249.