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My Jorja is not dying because she has a rare condition, she's dying because she's not getting proper treatment for her epilepsy It's not available in Northern Ireland; HEARTBREAK OF TWO BABIES FIGHTING MEDICAL BATTLES; TRAGIC TOT 1 EXCLUSIVE.

Byline: JILLY BEATTIE

THE father of a desperately sick baby says he fears she will die in hospital before he can get her the help she needs.

Robbie Emerson and his wife Carly have been at the bedside of their daughter Jorja since July 7 and fear they are now on the same road as Charlie Gard's parents who lost their son yesterday.

Their 17-month-old daughter, who has a rare condition which triggers stage 4 epilepsy, has spent weeks between the Royal Victoria and Ulster hospitals but is still without a personal medical care plan.

Robbie says Jorja: has no personal treatment protocol in place suffers seizures for hours before she is sedated is at the centre of a disagreement between medical departments over her needs, ;has been denied treatment in the US because her medical notes have not been released by the RVH to the family's solicitor.

Robbie said: "My daughter is not dying because she has a rare condition.

"She is at risk of dying because she's not getting proper treatment for intractable epilepsy. It is not available in Northern Ireland.

BATTLING

"Every fit, every seizure could kill her. We have been watching her fighting for life for two weeks now. She is battling and we are battling for her but we feel she is lost in a system that cannot give her the care she needs.

"We have been in and out hospital over the last six weeks and been in hospital continually since July 7 with two intensive care visits.

"My concern is I know it would be much easier for the hospitals if children like Jorja, children with complex needs, were not here.

"We have been told her seizures are uncontrollable and we know for a fact that is not true. We have been able to advise the medical team ourselves how to control them - and I'm a restaurateur not a doctor.

"It's the same situation Billy Caldwell from Castlederg was in.

"His mother Charlotte has fought for 11 years to get him help. She was told to take him home and make him comfortable, to build final memories and let him go.

"But because Charlotte followed her instincts, Billy is still here and thriving.

After 11 years he still has personal treatment protocol from the people we are dealing with.

"When medical experts try to convince me it's better to let Jorja go, I know it's nonsense and she will be going nowhere without myself and Carly fighting to the end for her.

"We have neither the medical expertise or the facilities to treat children with intractable epilepsy so why not let us have Jorja's notes, admit the medical teams simply do not have the expertise in Northern Ireland and let us go for treatment somewhere that does."

Robbie said Jorja has also fallen victim to contradictory medical assessments between two departments at the Royal Victoria Hospital. He added: "We were told by one doctor we needed to come to terms with her fast approaching death because her brain was rotting.

"I was so upset I was physically sick in the toilets of the hospital.

"Almost a fortnight later we have been told by another doctor her scans have not been read properly and that she's not dying at all.

"Her brain scans show slight malformations which would only result in a delayed development. But she is not dying from her condition."

However Jorja could die from seizures triggered by her rare chromono some disorder, 1q43q44 deletion. Robbie, 30, from Bangor, Co Down, said: "We want to take Jorja to Miami for assessment and treatment for intractable epilepsy but the RVH still have not released her medical notes.

"The Ulster Hospital team are happy to hand them over but without the RVH notes we cannot get treatment in the US.

"The specialist in Miami need Jorja's notes. I have asked for them, our solicitor has written to them urging them to be released and still nothing "I'm Jorja's father. Who else but me or her mum would have more right to ask questions about our daughter's care? We are her parents. She is our whole world and we'll do everything in our power to help her live and help her have a good life.

"But we feel we don't have the back up from the people we need to help us. We fear Jorja will die at any time during an other seizure.

"We fear the delay in the release of her medical notes will result in her death because without them we cannot take her to the US where treating her type of epilepsy is an every day matter for the experts there.

The Belfast Trust which has responsibility for the Royal Victoria Hospital, was asked to respond to Robbie's concerns. A spokeswoman said: "No comment."

j.beattie@mgn.co.uk

VOICE OF THE MIRROR: PAGE 8

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LOVE Carly and Robbie Emerson with Jorja

SWEETHEART Little tot from Bangor, Co Down

STRUGGLE Jorja has rare condition
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Publication:The Mirror (London, England)
Geographic Code:4EUUK
Date:Jul 29, 2017
Words:839
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