BY MARK McKELVEY
THE disgraceful levels of treatment available for epilepsy sufferers in the North were highlighted further this week as a Castlederg mother explained how her 18 month-old daughter has been left blind and physically disabled from this life-threatening condition.
Ellie-Jay Loughlin who has the same Intractable Epilepsy diagnosis as Omagh toddler Billy Caldwell, was walking, talking and feeding herself before suffering an horrendous all-day seizure on May 23 that "burnt out" the brain cells that control eyesight and torso movement, causing irreversible damage. Ellie's mother Joanne believes that this could have been avoidable if she had of been assessed and treated properly earlier.
This case illustrates the severity of this epilepsy condition, that although Ellie was progressing and learning the next seizure has the capability to maim or kill.
Two year-old Billy is on a concoction of strong drugs, nullifying his brain activity, making him unable to walk and talk. His mother Charlotte feels it is only by the grace of God that Billy hasn't had a seizure that has left him permanently disabled like Ellie, but is fearful that this could happen at any point.
Joanne explained the lack of epilepsy resources in Britain, which she feels contributed to leaving her daughter permanently disabled.
"We were not sent home being told there was no hope like they did with wee Billy. We had good enough healthcare until our neurologist was off sick and then we didn't see a consultant for over eight months," said Joanne.
"When Ellie takes a seizure, she has to be ventilated and taken to the ICU in Belfast. We wait at home for an Ambulance which could take 40 minutes. If they are coming from Castlederg they could be here within five, if they come from anywhere else it is unreal."
Previously, a few days after a seizure Ellie would be back to normal, sitting up, waddling about as she learnt to walk. That was until this brutal seizure on May 23 which has left Ellie blind and disabled.
Joanne said, "She was in the fit for a full day and has been left completely blind in her right eye, with only partial vision in her left. We spent 12 weeks in hospital and were only discharged two weeks ago. Ellie is floppy all over and can't move any of her torso but since we left the hospital her leg movement has got better."
Like Billy, since Ellie's first seizure when four months old the only treatment options have been drugs and medication and was never told of any alternative options until now when irreversible damage has occurred.
"We were told at that time that nothing had shown in her MRI scans that warranted surgery. We were leaving everything in their hands as we didn't know anything about epilepsy, we have to take the doctor's word for it," said Joanne.
Ten weeks before the major seizure in May, Ellie had a another bad episode but although she was admitted to hospital in Belfast, she was never seen by a consultant.
"I am really unhappy as we were only put on a general ward and were never visited by a neurologist," she said. "I can't help but think if something had have been done at that time, maybe she wouldn't be left the way she is today."
Joanne asked the question, "Did it have to come as far as this? Does our child have to be disabled before they do anything?
Joanne received a letter on Saturday referring Ellie to Great Ormond Street which before this recent incident had never been an option. It is only since Ellie has been left blind and disabled that they have been told of this possibility.
"Even if we go to Great Ormond Street Ellie is still not going to be able to walk or see," said Joanne. "There is not enough resources in the hospitals here to cope with the numbers of children that are suffering from epilepsy.
"While in the hospital for the past 12 weeks, everyday a saw a different child coming in who had suffered a seizure, and it was breaking my heart thinking that these children are going down the same road as Ellie."
Charlotte Caldwell conveyed that she knows of other cases similar to Ellie's from meeting distressed parents while in hospital with Billy and hopes to address the issue when she meets the Assembly Health Committee on September 6.
She said, "The resources are simply not here to give a proper diagnosis of each individual case. I am meeting with the Health Committee, primarily to seek the necessary funding to help pay for Billy's treatment in America but also to highlight to the MLA's the national scandal that is occurring in Northern Ireland concerning the disgraceful treatment given to children suffering from epilepsy because of the lack of proper resources."
