Four-year-old East Lancs boy who survived fatal heart condition has another terminal condition (From Lancashire Telegraph)
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Four-year-old East Lancs boy who survived fatal heart condition has another terminal condition
Updated 4:07pm Thursday 27th March 2014 in News
A YOUNG boy who overcame a potentially fatal heart condition has been diagnosed with another terminal disease.
Carson Hartley, four, survived the ‘death sentence’ of blue baby syndrome, numerous fits and heart attacks and lost his voice box due to tubes and operations.
Now his parents have been told that an unforeseen genetic condition means he is living on borrowed time.
In order for Carson to survive as a baby, his parents endured an anxious first winter preventing him catching a cold.
The family went through a rollercoaster of emotions when he contracted pneumonia, but he shook it off.
Then his parents were devastated to learn the treatment had destroyed his voicebox, meaning they would never hear him say his first word.
Recently, the Hartleys from Oswaldtwistle, were delighted to see their son doing well, learning sign language and going to school.
Now they have learned he has a degenerative genetic condition, which will rob him of all his progress.
Mitochondrial disease, causes a breakdown in the body’s cells. It is a rare condition which means a lack of healthy mitochondria, the tiny biological batteries that power the body’s cells. The time he has left is highly unpredictable.
His mounting symptoms saw mum Kirsty Harrison and dad Damian Hartley tie the knot recently so Carson would be present at their wedding.
Kirsty said: “He has been going to school full time and using sign language; he has come a long way and has quite a good quality of life.
“This diagnosis is hard to take. From what we understand it is a cruel disease and unpredictable. Some children have a few weeks, for others it takes years.
“We have very mixed emotions. We are so proud of what Carson has achieved.
“There has been intense therapy to get him where he is and it will all be taken away from him.
“We are still a bit numb. We were told on Wednesday in Alder Hey and knew it was not good news when the doctors called us in.
“We want to make life as wonderful for Carson as we can for as long as we can.”
Carson’s family, who moved to Liverpool for his care, have started fundraising to give him more experiences while there is still time. To help, visit www.gofundme.com/7p84fk.
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