Chorley CitizenFour-year-old East Lancs boy who survived fatal heart condition has another terminal condition (From Chorley Citizen)

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Four-year-old East Lancs boy who survived fatal heart condition has another terminal condition

Chorley Citizen: Carson Hartley with his mum Kirsty on her wedding day. Kirsty and Carson’s dad Damian married recently so that Carson could attend the ceremony Carson Hartley with his mum Kirsty on her wedding day. Kirsty and Carson’s dad Damian married recently so that Carson could attend the ceremony

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.

Comments (4)

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4:08pm Thu 27 Mar 14

useyourhead says...

Such bad luck visited on this little man, I hope they get time to built lots of precious memories before he has to go.
Such bad luck visited on this little man, I hope they get time to built lots of precious memories before he has to go. useyourhead
  • Score: 16

4:14pm Thu 27 Mar 14

mavrick says...

I admire the courage of the family including the little fella. I wish them all the best and will keep them in my thoughts. And we thought we had problems.
I admire the courage of the family including the little fella. I wish them all the best and will keep them in my thoughts. And we thought we had problems. mavrick
  • Score: 14

4:35pm Thu 27 Mar 14

GracesDad says...

My heart goes out to the Carsons. Lost my little girl 5 years ago to a genetic disorder but we filled every spare minute with wonderful times. I urge you all to visit the fundraising page and donate anything you can to enhance this brave young mans life.
My heart goes out to the Carsons. Lost my little girl 5 years ago to a genetic disorder but we filled every spare minute with wonderful times. I urge you all to visit the fundraising page and donate anything you can to enhance this brave young mans life. GracesDad
  • Score: 8

7:11pm Thu 27 Mar 14

East_lancs_lad says...

How sad, my heart goes out to this little boy and his family. It makes one think how lucky some of us are. I am sure he will bring joy to his parents in the time that he has left with them as every minute will be treasured. I do hope that his fund raising is a success, I'm sure if we can raise tens of millions for sports relief we can do that little for this family.
How sad, my heart goes out to this little boy and his family. It makes one think how lucky some of us are. I am sure he will bring joy to his parents in the time that he has left with them as every minute will be treasured. I do hope that his fund raising is a success, I'm sure if we can raise tens of millions for sports relief we can do that little for this family. East_lancs_lad
  • Score: 3

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