AFTER 18 months of watching their precious and beloved child deteriorating before their eyes, the O’Shea family is finally getting nearer to discovering what their daughter’s serious illness is.
Over a year ago, Pippa O’Shea, a happy, bubbly five-year-old girl from Enniskillen, began to show signs and symptoms of a ‘neurological deficit’, that affected her ability to speak and caused extreme fatigue.
In desperate need of help and support, Pippa’s parents, Julie and Mark, turned to the Royal Victoria Hospital for Sick Children, but shockingly, their child was ‘forgotten about.’
“She had an MRI done in the Royal this time last year, but we are still waiting for somebody to read the results,” explained Julie.
“She was referred to the Neurology Department after that, but when I rang up to ask where Pippa was on the waiting list, we were told that she had been taken off the list.
“We had to go private because she was forgotten about basically. We had no choice.”
Julie and Mark desperately got Pippa referred to the London Children’s hospital, and she was later sent to see a pediatric neurologist at Portland Hospital in London.
Last week, Pippa underwent a wide range of genetic testing to try and discover a diagnosis.
“We are now waiting for them [the genetic testing] to come back so that we have a full picture of what is happening.”
While they wait for a diagnosis, the early signs suggest that Pippa might be suffering from some type of developmental epileptic encephalopathy, which is a severe seizure disorder.
“As far we as we know, there are two types – with one, a recovery is very possible and then there is another progressive type where she will get worse,” said Julie.
“Pippa did have one round of steroids in June and she responded very well to that, so it gives you the hope that she has the type that the doctor thinks she has and that she will recover from it.
“You just have to stay hopeful, don’t you?”
The five-year-old is suffering from severe fatigue and she ‘sleeps for hours.’ This has proved difficult for Pippa’s family to watch and come to terms with.
“Pippa’s brain is very active during the night. There is a lot of seizure activity, and even though she sleeps sound, she is tired,” explained Julie.
“It is awful. For a child that was so outgoing and sociable, to see a child that now is so sick.”
Pippa is unable to speak and suffers from a range of other neurological problems. This is very tough for her family, who feel she is already missing out on many things in her young life.
“You are just thinking of what she should be doing and she is missing out on everything, all of that part of her childhood,” said Julie.
“She was a very good wee talker and people who hadn’t seen her in two or three weeks were asking if Pippa was OK. Her speech was just gone.”
Spending so much time in London also has ramifications for Julie and Mark’s other children Ayda, 4, and Gia, seven months.
“The middle one, Ayda, is just after starting nursery and we should be there bringing her every day, not just sometimes,” said Julie. “It is very difficult because you want to be at home with them all of the time too.
“The baby, Gia, is only seven months so it is a lot, trying to juggle it all, and we also have businesses to try and throw into the mix.
“We are very lucky in the sense that we have a great support system. My mum looks after the children when we are away and they are very happy with her. We are very lucky to have her.”
To help with the expense and cost of travel over to London, a GoFundMe page was set up to raise money for the family.
At the time of going to press, a staggering £69,639 has been raised, and Julie said she was overwhelmed with the support that they have received from near and far.
“It is unbelievable,” she said. “The fundraising has just gone through the roof.
Donations to Pippa’s GoFundMe page can be made to: https://www.gofundme.com/f/txgx2-pippas-road-to-recovery.
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