Fundraiser to be held for Cork baby Evie Mae with rare blood disorder

A fundraising campaign has been set up to support a Cork family as their newborn baby undergoes ongoing medical treatment in Dublin.

Evie Mae McGlynn, who is four months old, was diagnosed with a rare blood vessel disorder, Vein of Galen Malformation (VOGM) in October, following a seizure at less than a month old.

VOGM is a condition where arteries bypass the usual connection to capillaries, which causes a high-pressure rush of blood, impacting the heart, and leading to potential heart failure, pulmonary hypertension, and brain damage.

Since October, Evie, who is a twin to brother, Kai, has undergone several surgeries, and suffered from two strokes, leading to her transfer from Cork University Hospital (CUH) to Crumlin Hospital in Dublin.

Speaking to The Echo, Evie’s father, Jonathan McGlynn, said he and Evie’s mother, Caitriona, have been travelling to Dublin five times a week for the last number of months.

“It’s been a long few months,” said Mr McGlynn.

“At the end of October, Evie had a seizure at home, and up until then, we had no idea what was going on.

“We were told she had a bleed on her brain – so we were rushed from CUH to Crumlin, and it was the following day that we found out she has VOGM.

“It’s very rare, and Evie’s condition is extreme – she had a clot on the brain, and to treat VOGM you have to use blood thinners, but because of the clot, they weren’t able to use the therapeutic levels, and it made it even more complicated.

“She's had three operations so far, and has another one scheduled for next week.

“She’s had a lot of ups and downs, she had a stroke after the last surgery, which would have been her second one, but she’s fighting through it.” 

Mr McGlynn said medical professionals are concerned about the impact to Evie Mae’s vision, and are looking at transferring her to Great Ormond Street Hospital for Children in England for further treatment following her upcoming surgery.

To assist with the cost of medical treatment, and the cost of being out of work, Mr McGlynn has set up a GoFundMe, which, at the time of print, had €18,064 of the €75,000 target raised.

To make a donation to the fundraiser, visit: https://www.gofundme.com/f/eviemae.