Daily Mirror (Northern Ireland)
Fresh hope for baby Jorja
Bid for US care for ill baby after parents get files
MEDICAL notes belonging to sick baby Jorja Emerson were handed to her desperate dad yesterday.
Robbie Emerson was given what he was assured are the records “in entirety” from the Belfast Trust.
He spent much of last night sending the paperwork electronically to experts in Miami who hope they can treat his 17-month-old daughter.
With no one known to specialise in her condition in Northern Ireland or the UK, the little girl’s parents Robbie and Carly are hoping she will be treated in the US.
Her dad said: “Now we need to find the care to match Jorja’s needs. Carly and I will do everything in our power to help our daughter.
“We’re like every other family. We just want our child to be as safe and well as possible and we will fight for the health care she deserves.”
Jorja was born in February 2016 with a rare chromosome disorder called 1q43q44 deletion syndrome.
It causes developmental delay and although it is not life-threatening it has triggered stage 4 epilepsy in the toddler – and every seizure Jorja suffers puts her life at risk.
Robbie and Carly, from Bangor, Co Down, have already been in discussions with medics at the Brain Institute at Miami’s Nicklaus Children’s Hospital.
Staff there have been waiting to read the medical records and have contacted the family on a number of occasions to say speed was essential.
Robbie, 30, from Bangor, Co Down, made four requests for his daughter’s notes, a solicitor asked for them twice and human rights lawyer Marie Hans, from Kevin Winters Law, Belfast, made a seventh request.
Her letter was delivered this week with a threat of legal action if the paperwork was not forthcoming from the Trust within 48 hours.
She said: “We are now over the first hurdle in getting the notes the specialists in Miami have asked for.
“They have been handed to Jorja’s dad so he can discuss them with the team who are in contact with him from the US. We have been assured the notes delivered to us are Jorja’s notes in entirety.
“At the centre of this issue is a little girl who needs help. So we have had some positive news today but there’s a long way to go.
“Jorja is still desperately ill and in need of specialist care.”
A spokesman for Unique, a support network for families living with chromosome 1q4 deletion like Jorja’s, said: “The deletion means the cells of the body have a small amount of genetic material missing from one of their 46 chromosomes – chromosome 1.
“For healthy development, chromosomes should contain just the right amount of genetic material – or DNA – not too much and not too little.”
You can support Jorja’s bid to access treatment in the US at www. justgiving.com/campaigns/charity/ just4children/jorjaslasthope.
Jorja is still desperately ill and in need of specialist care LAWYER MARIE HANS BELFAST YESTERDAY