The parents of a baby girl diagnosed with a rare brain condition are raising funds in the hope of bringing her to the UK for specialist treatment that could change her life, reports The Mirror.
Brave infant Evie Mae was born last September to her parents Jonathan and Caitriona, alongside her twin brother Kai, reports The Mirror.
Evie was diagnosed with a Vein of Galen malformation, a condition affecting roughly one in a million babies, where abnormal blood vessels cause blood to flow too quickly and under high pressure, placing serious strain on the heart and brain.
In newborns, the condition can be life-threatening and often requires multiple complex procedures, reports The Mirror.
Evie spent around eight weeks at home with her family before suffering a seizure, leading her parents to rush her to A&E in Cork. Since then, she has undergone four surgeries and has been treated between hospitals in Cork and Crumlin.
She remains under care in Ireland after enduring a difficult few months, while a fundraising campaign is now underway to help her access specialist treatment in the UK, reports The Mirror.
“She had the fourth surgery,” Jonathan told the Irish Mirror. “It was kind after that where things got a bit complicated, because the CT scans went after part of the brain that naturally closes at six months old. So the surgeons were waiting for that to see if it happens.
“The last CT scan that she had, there’s too much artefacts in it for them to read properly, because of the coils that they use for the embolizations.
“Evie still has the catheter retained, so they can’t give her an MRI. It’s just very tricky at the moment to even get imaging to see whether the malformation is closing or whether she needs further surgeries, reports The Mirror.
Jonathan explained that one of their biggest concerns is the limited window for brain plasticity in infants.
“And kind of our biggest concern is that the plasticity in the brain would kind of be gone after, say, nine months to 12 months, and we don’t want it to get to the stage where she’d need another surgery.
TheLiberal.ie won’t quit
Please support us with a small donation on PayPal!
“If it was something that could have been done earlier to prevent further damage, we don’t want that to happen, reports The Mirror.
The family now hopes to raise enough money to bring Evie to a highly experienced specialist in the UK.
“There is a specialist in Great Ormond Street. He’s, dealing with this for over 20 years with the Vein of Galen itself, and he has a private clinic over in the UK,” Jonathan said.
“So I suppose, look, that’s where we were saying, ‘Look, how would we go about getting over there’.
“Because obviously, with the government, the Irish government, if the surgeons in Ireland are willing to do the surgery, they won’t fund your travel to the UK.
“And because surgeons here, because they’ve done four surgeries here already, it’s kind of something that we would have to fund ourselves, reports The Mirror.
He added that they want to act early rather than wait for the condition to worsen.
“We were thinking of Evie’s life, that it was something that we could prevent from happening, why should we have to wait to see what is the outcome, rather than trying to prevent it?, reports The Mirror.
UK specialists would be able to perform an angiogram, a minimally invasive imaging procedure that allows doctors to examine blood vessels in detail, something that cannot currently be done in Ireland for several months.
“There is a thing that they, even with the specialists around the UK, it’s called an angiogram,” he said. “So they literally go in the same way as if they were going to do the surgery, basically, it’s like a camera, instead of doing CTs, they can go in and they’ll be able to see what’s happening.
“But again, that can’t be done here until she’s another three to four months before Crumlin can even see her.
“And we could be waiting another further two months then before we could get that done. That’s going to be when Evie, she’s going to be one by then. So again, if there was something that needs to be done that plasticity is gone then so, reports The Mirror.
Jonathan said that as parents, they are determined to do everything possible for their daughter.
“It’s different when it’s your own child, you’d do anything for them,” he said.
“And again, a lot of, even from what we read, is prevention at the early stages, the more you can prevent, the better, I suppose like anything really, but especially with this Vein of Galen, because if it was to continue to grow, and weren’t to know for the next six months we could be basically back to where we started.
“That’s the worrying thing, really, the fact she’s after four surgeries already. We don’t want that either, reports The Mirror.
Tell us your thoughts in the Facebook post and share this with your friends.
