Daily Mirror (Northern Ireland)
We need to raise another £123k minimum and it’s mind-blowing
Mum and dad make appeal as brave tot with rare condition accepted by top hospital
“It would be horrendous but it would be OK if we had the medical team with us.” Nicklaus Children’s Brain Institute is described as home to a unique team of specialists, nurses, technologists, therapists and caregivers who provide unrivalled care, delivered with compassion and empathy for the children we treat and the families we serve.
Jorja’s medical notes have already been passed to the US team and they have formally agreed they will accept her for assessment and treatment.
But without NHS funding and with no financial assistance from the nonfor-profit hospital, the initial costs of the little girl’s care must be paid for up front and it adds up to £130,000.
In a letter to the Emersons, a spokesman for the Miami hospital said: “The initial Hospital Estimate cost would be $100K, which would have to be paid in full as a deposit. Please keep in mind that this is only an estimate – the total charges could be more since the hospital is a nonprofit organisation and we don’t provide any type of financial assistance.”
Carly said the cost of Jorja’s initial medical treatment is terrifying but she knows it is her only chance.
She added: “I’ve looked at the figure over and over again and I know we have already raised about £7,000 which is brilliant.
“But it’s terrifying knowing that the difference between life and death for my daughter is money.
“We need to raise another £123,000 minimum and that’s mind-blowing.
“But when I look at my little girl, those big beautiful eyes, that gorgeous smile and I see her working her little legs and arms as I do physiotherapy with her, I just think if 150,000 people gave us £1 each we’d be all set to get started. I feel so embarrassed to ask for money and if it was for me I wouldn’t dream of it.
“But it’s not for me so I’m willing to ask people to empty their loose change on to our funding page and I live in hope that within a month we could be on our way to save Jorja’s life. Every day she is in Northern Ireland without proper assessment or treatment is a huge risk.”
Carly’s pregnancy with Jorja appeared normal for the first 36 weeks until a scan picked up she was not growing at the expected rate. The mum said: “The doctors told us when she was born that her head was a little small but to be honest we weren’t worried.
“She was here with us and she was safe. “Whatever the future brought, we would deal with it. “She seemed fine and was growing well and developing but last November she started having seizures and in December she was diagnosed as having chromosome deletion 1q43q44. “It meant nothing to us at the time but it means the cells in Jorja’s body have a small amount of genetic material missing from one her chromosomes and she’s at increased risk of birth defects, developmental delay and learning difficulties.
“Robbie and I took in what was being said and we just carried on. But on July 7 Jorja went blue and collapsed into a seizure.
“I thought she was going to die and I was desperate for help.
“We got an ambulance to the Ulster Hospital and by the time we got there she had come round.
“But it was the start of where we are now – begging for help, wondering if it will be offered and hoping against hope we can save our little girl.”
If you would like to help Jorja complete her journey to Miami visit www.justgiving.com/crowdfunding/ jorja-emerson.