Belfast Telegraph

Couple's desperate plea for help to save baby daughter Jorja Emerson's life

By Claire McNeilly

A Northern Ireland couple are in a race against time to raise £100,000 for their seriously ill 17-month-old daughter.

Little Jorja Emerson was born with a rare chromosome disorder - 1q43q44 deletion syndrome - which causes severe epilepsy.

She is currently in intensive care in the Royal Victoria Hospital in Belfast and the prognosis is not good, but her family are not giving up.

Speaking to the Belfast Telegraph, her dad Robbie (30) said Jorja was diagnosed with the rare illness, which causes developmental delay, when she was 10-months-old.

"Jorja was born with a small head and she had heart problems which later rectified themselves so, before the diagnosis, we didn't realise there was anything wrong with her," Robbie said.

"We could see that her development was slower than other children the same age - she wasn't rolling over or sitting up, etc, but in the last wee while she has been fantastic. She can now roll over herself, she can lift up toys and, up until a few months ago, she was just a happy, giggly, bubbly, normal baby girl."

Restaurant owner Robbie, from Bangor, and his 30-year-old wife Carly have been maintaining a vigil by their only child's hospital bedside as her health has deteriorated. "Jorja had her first seizure in November, before the diagnosis. That was followed by more attacks in February but then they stopped completely until June," he explained.

"She has been extremely unwell over the last six weeks with her epilepsy. At the end of June she began to take more and more seizures and she was in and out of hospital.

"Now that July has come she has been admitted twice into intensive care - the first was July 7 when she was there for four days, and then she got sent to the Ulster Hospital.

"On July 12, Jorja took a major seizure lasting 17 hours and that has concerned us a lot. She was eventually taken to the Royal at 3am on July 13 and she has been in intensive care ever since."

The devastated businessman said that, following two MRI scans, he and Carly were told she has "considerable decay in white brain matter".

"Essentially the prognosis is that Jorja's dying," said Robbie.

"This is being linked to her chromosome disorder but I really want a second opinion because we are not 100% sure if this is genetic decaying of her tissue - or if the damage has been caused by multiple prolonged seizures.

"No neurologist will give us a second opinion here in the UK, as the hospital neurologist feels he is correct and no one will go above him. This is why we believe we have no other option but to go to England and seek private care for Jorja."

He added: "There are so many unanswered questions. In this short space of time Jorja has rapidly went downhill and we are pleading for your help."

The Emersons have set up a JustGiving page to raise vital funds to get Jorja to London for a private neurology second opinion.

"The private hospital in England which has agreed to take her requires a £50,000 deposit up front. That will only cover us for a week, and if we need to stay longer it will cost £6,000 plus per night," he added.

"Our close friend Rory McNaughton has agreed to pay for private air transport and accommodation, for which we are very grateful. We are thankful from the bottom of our hearts for any donation that we receive to help our baby girl."

The Emersons' justgiving page can be found at https://www.justgiving.com/crowdfunding/jorja-emerson

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