A COUPLE has told of their heartbreak at finding out their all three children have a rare terminal disease.
The Sun reports Noreen and Lester Jessop’s 10-year-old son Daron and four-year-old twin daughters Angela and Aubrey were diagnosed with a brain disease which causes involuntary muscle spasms and trouble walking.
Called pantothenate kinase-associated neurodegeneration (PKAN), it is a neurological condition that means their children might not live long past 10.
But Mr and Mrs Jessop, of Saint George, Utah, are hopeful that an upcoming clinical drug trial may offer a chance for their children to live longer lives.
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Mrs Jessop told Daily Mail Online: “Being told that your children won’t live to be 10 years old or having (doctors) tell us to enjoy them while they were alive is the most devastating news a parent can have.”
The family learned something was wrong shortly after Daron was born in 2008 because he didn’t start crawling until he was 13 months old.
By two he could crawl but there was no sign of walking
Worried doctors then carried out an MRI scan, which detected iron deposits in his brain.
But despite this, medics were clueless as to what was wrong.
By four he was still crawling, leaving his knees bleeding as well as tumbling over and bruising himself.
Meanwhile when twins Angela and Aubrey turned two, Mrs Jessop noticed they were facing the same developmental problems as their older brother.
Test showed they had iron deposits in their brain which eventually led to a geneticist diagnosing the three children with PKAN.
The physical disabilities were clear already but the couple were devastated to learn their beloved children my never live to teenage-hood.
Mrs Jessop said: “It was a very tough time.
“Me and my husband would just sob and sob ... we were a mess for months.”
For now they’re hopeful a clinical drug trial can give their children a second chance at life.
This article originally appear in The Sun