Sunderland baby dies of rare condition aged 16-weeks

Baby Isaac Coxon died at just 16 weeks old.
Baby Isaac Coxon died at just 16 weeks old.
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TINY Isaac Coxon lived for just 16-weeks until a rare condition claimed his life.

Today, his heartbroken parents vowed to help fight the disease which took their baby boy.

Megan Stephenson and John Coxon with their 2 year old daughter Lydia Coxon and their son,  Isaac Coxon who died at just 16 weeks old.''*****COPY PICTURE*****

Megan Stephenson and John Coxon with their 2 year old daughter Lydia Coxon and their son, Isaac Coxon who died at just 16 weeks old.''*****COPY PICTURE*****

Isaac died from Spinal Muscular Atrophy (SMA), which affects just one child in the North East a year.

Though he was born seemingly healthy, the Washington youngster lost movement at just seven weeks old as the extreme muscle-wasting disease took hold.

Now, just weeks after his death, mum Megan, 21, and dad John, 28, have pledged to support research into the devastating condition.

Speaking from the family home at The Oval, Concord, Megan, who is also mum to Lydia, one, said: “We still don’t understand why it had to happen to us.

Baby Isaac Coxon died at just 16 weeks old.''**** COPY PICTURE ****

Baby Isaac Coxon died at just 16 weeks old.''**** COPY PICTURE ****

“Lydia is what is keeping us going at the minute. We have to be strong for her.”

Isaac was born at Sunderland Royal Hospital weighing 8lb5oz and for the first few weeks of his life showed no signs of harbouring the killer condition.

“We started noticing something wasn’t right when he was four weeks old. He wasn’t interested in toys and he wasn’t reaching out for things. When he was asleep at night his blankets wouldn’t move,” recalls Megan.

“He had passed his six weeks health check and at first we thought he was a lazy baby, but at seven weeks old, my mam babysat him and said she was really worried about him.”

A subsequent blood test revealed Isaac had SMA, an incurable genetic condition which causes progressive muscle wasting, loss of mobility and motor function.

Fifty per cent of children diagnosed with the disease die by the age of two and a devastated Megan and John were told Isaac would not live long.

He spent his final weeks at home where he was still able to smile and lightly grip with his hands.

But the strain of breathing took its toll on his tiny weakened body and he died in the arms of his mum and dad on Sunday, March 4.

Megan said: “He still used to smile a lot. We’re told babies who have the disease are really intelligent, their minds know what is going on, but their body can’t respond.

“We’ve been to the genetic clinic who’ve confirmed we both have the faulty gene.”

Because Megan and John are both carriers of the gene which causes SMA, any children they have will have a one in four chance of developing the condition but any future pregnancies can be tested for the condition at eleven weeks.

Lydia is a healthy lively little girl, but can be tested to see if she carries the gene when she is older.

Megan said: “Lydia loved her little brother. She asks for him all the time and at night she blows a kiss to the stars for him.”

Now, the family are ploughing their efforts into raising funds for The SMA Trust in the hopes that one day a cure can be found.

At Isaac’s funeral they asked for donations to the trust in lieu of flowers and Megan and John, a retail manager for Sports Direct, are planning to do the Great North Run for the charity.

In Isaac’s memory, a charity night is also being held at the Stella Maris in Albany, Washington, on June 15.

•The family would like to thank everyone who has made donations to the cause so far as well as Dr Harvey and Jill McDermott from the Niall Quinn Children’s Centre.

•For information on SMA and to donate to The SMA Trust visit www.smatrust.org.