Parents fight to save baby with rare genetic disorder

The parents of a baby whose thought to be the only child with a rare chromosome disorder in Northern Ireland are planning to travel to England for a second medical opinion on their treatment options.

Bangor infant Jorja Emerson is 17 months old and has 1q43q44 deletion syndrome, a rare chromosome disorder that has affected her development.

In November last year she started having seizures and now her parents Robbie and Carly have been told to prepare for the worst.

They have been left with many unanswered questions.

Carly told UTV: “I thought we’re getting somewhere, she started rolling over, she started catching her feet and now with all her seizures and this last week, I just feel totally heartbroken.

“It’s horrible, it just feels like we’re lost, we’re on our own. She’d be having prolonged seizures, this is her second time in intensive care, she had a prolonged seizure on the 11 July and it lasted 17 hours. Unfortunately we got worse news, we were told that our daughter’s brain is decaying.”

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