TWO Irish parents have said they are in a race against time to transfer their infant daughter to Britain for treatment they believe could save her life.
Jorja Emerson, aged 17 months, was born with microcephaly but following genetic analysis last December, parents Robin and Carly Emerson were told their daughter has a rare chromosome disorder.
“They told us that Jorja has 1q43q44 chromosome deletion, which means she will have delayed development, and will take a while to meet her milestones compared to a child of her age,” Mr Emerson, from Co. Down, told The Irish Post.
But the 30-year-old says that while Jorja was a ‘happy, giggly baby’ who was developing well with her condition, this changed earlier this month following increasingly frequent seizures for which she was hospitalised.
“Epilepsy is part of her condition, but in the last month, she has started to have more and more seizures.
“Her first really bad seizure was on July 7, when she had to be put to sleep and incubated, and sent to intensive care because they couldn’t get her out of the seizure,” Mr Emerson said.
Carly, Robin and their daughter JorjaJorja was later transferred out of intensive care on July 11, when she was then moved into the Ulster Hospital, closer to her parents’ home.
The next morning, however, she started a series of cluster seizures which she continued to endure until the following morning.
“Jorja would come out of the seizure for a couple of seconds, and then go straight back in again. They were getting longer and longer and she couldn't break them," her father said.
“She’d open her eyes, and go straight back into different types of seizures, from seizures where she stares forward, seizures with her eyes closed, or where her eyes go to the left, and seizures where all her limbs jerked.
"It was the worst thing we've ever experienced."
In the early hours of the next day, 17 hours after Jorja started seizing, she was incubated and put in intensive care.
Following that massive episode, an MRI scan showed decay on the white matter on Jorja’s brain.
According to her parents, medical professionals in Northern Ireland have said the decay is down to the chromosome deletion disorder.
But Mr Emerson believes the increase in seizure activity has impacted on their daughter's health.
“We just don’t understand, Jorja was doing extremely well and other medical professionals were astounded with how well she was doing.
“They’ve told us our child is dying, but they can’t put a time scale on how long we have left with her,” Mr Emerson said.
“There’s too many unanswered questions.”
Now Jorja’s parents have launched a campaign to transfer their little girl from the NHS hospital in Northern Ireland to a private hospital in London.
“I'm trying to find the answers, and there's nobody in Northern Ireland who can give that to me, that's why we need to get to London to see a neurology team.
“Doctors have got this wrong in the past and I need to get a fresh pair of eyes and new people to look at this and give their evaluation.”
But the cost of the transfer and treatment for Jorja is colossal.
The private hospital requires a £50,000 deposit up front, which will cover the care for the infant for approximately one week, with an additional £6,000 per night should they need to stay longer.
While a close friend has offered to take care of the private air transport for the family, they also need to raise money for the appropriate medical team to travel with them to London.
Mr Emerson is adamant that the best option for their daughter is to transfer her to London.
"To keep her in a hospital in Northern Ireland would be handing my daughter a death sentence, because there is nobody here to help her.
"Even if her brain isn't decaying, we're going to be sitting here as parents worrying out of our minds for the next few months that Jorja will die.
"We need a second opinion and our only option for Jorja is private care in London, so we're working hard on raising the funds," he said.
