Daily Mirror (Northern Ireland)
Family in fight to get help for ill baby Jorja
Fundraising appeal to get tot with rare disorder specialist care in England
THE parents of a baby girl who struggled through a 17-hour seizure are raising funds to have her privately assessed.
Jorja Emerson has been diagnosed with a rare disorder which includes epilepsy.
The 17-month old’s father Robbie, from Bangor, Co Down, said: “All we want is a second opinion and help to help our daughter.
“We’ve been told she is suffering from genetic decaying of her brain tissue but we just do not feel this is right.
“We know she has issues and we are coping with that. She has a developmental delay but she was still reaching the goals we hoped for but just a little more slowly.
“Just recently she has been rolling over and it was cause for celebration in our house.
“But over the last six weeks Jorja has been very sick and in hospital and we feel that treatment and assessments are not what we’d expect.
“We are being asked as parents by staff when to give her medicines and over July 12, staff at the RVH refused to sedate her despite the fact she was having a seizure.
“Anyone suffering a seizure for an hour or more is meant to be sedated.
“Jorja’s seizure this time lasted 17 hours and in that time there were just two hours when she was a little quieter and trying to sleep but we could see she was still fitting. It was horrendous.
“We just had to sit there and watch as this went on and no one did anything. In the end my wife Carly was literally screaming for help and they sedated Jorja.”
Robbie, 30, who owns the Cook restaurant in Bangor and the Red Champagne Bar at Scrabo Golf Club in Newtownards, said he will fight for his daughter’s best interests either with or without specialist support in Northern Ireland.
He added: “We know and accept that Jorja has a complex condition. She was born with a rare chromosome disorder called 1q43q44 deletion and it means she is prone to seizures.
“She has been treated at the Ulster Hospital and the Royal Victoria Hospital and at the RVH, Jorja’s neurologist has told us that Jorja has damage to her brain.
“At this stage we don’t now if this is genetic decaying of her tissue as her neurologist states or caused by multiple prolonged seizures and that’s why we want a second opinion. But no other NHS neurologist will give us a second opinion here in the UK because the RVH neurologist feels he is correct and no one will go above him.
“We have no other option but to go to England and seek private care for Jorja.
“Of course that takes big money and so we are asking for help.” The Emersons have set up a crowdfunding page with the hope of raising £100,000.
Robbie said: “Her mum Carly and I feel as Jorja’s parents that we need the best possible care we can provide for this complex condition, and to give Jorja the best chance to recover.
“In a very short space of time Jorja’s condition has gone downhill rapidly and we’re basically begging for help from friends, family and strangers.
“Our gut feeling is we are not getting the answers to our questions, we feel decisions are being made quietly, perhaps in a bid to save us anxiety.
“But nothing will do that. We have straight questions, we want straight answers and it seems clear that we’re going to have to go to England to get private care for Jorja.
“We will deal with the answers. We will do everything we can. The private hospital that we have made contact with requires £50,000 up front as a deposit. This will cover us for roughly a week, and if we need to stay longer the cost will be £6,000-plus per extra night.
“On top of this we will also have to arrange private air transport and accommodation.
“We are thankful from the bottom of our hearts for any donation that we receive to help our girl.
To donate to the fund visit www.justgiving. com/crowdfunding/ jorja-emerson.
BANGOR, CO DOWN