Daily Mirror (Northern Ireland)
SEARCH IS ON FOR EXPERT TO HELP SICK BABY JORJA
Parents are promised Uk-wide trawl
MEDICS are set to carry out a nationwide search for an expert in a rare condition baby Jorja Emerson is living with.
More than four months after the tot’s parents begged for help from local medical teams, they have been told a thorough search will be carried out for a UK specialist.
It is hoped Jorja, from Bangor, Co Down, can at least be assessed if not treated without a gruelling trip overseas.
Dad Robbie, 30, said: “We’ve been searching for a specialist ourselves for the past three months and as far as we know there is no one in the UK who specialises in the condition. The medical team asked us where we wanted Jorja treated and we told them we wanted her to go the the US where there are specialists.”
The tot, now aged 20 months, was born in February last year with a rare chromosome disorder called 1q43q44 deletion syndrome.
It causes developmental delay but is not life-threatening. However, it has triggered stage four epilepsy in the youngster – and every seizure puts her life at risk. Robbie added: “We were told the Royal Victoria Hospital would support our request to travel to Miami to get Jorja treatment but we would have to rule out having her seen by an expert in the UK first.
“Our daughter’s life is more fragile than many little girls her age because she is so susceptible to seizures which could prove fatal. So the search is on.
“Jorja is currently out of hospital and back home but she is only on suspended leave and heavily sedated to hold back these life-threatening seizures. It’s far from ideal.
“We have struggled to have our voices heard about Jorja and have been trying to raise money to get her to the US. But today we had a breakthrough and we feel we have been listened to and heard.”