Cork Family Launches Campaign for Infant’s Rare Blood Vessel Disorder Treatment
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A fundraising campaign is underway to support a Cork,Ireland,family as their four-month-old daughter receives ongoing medical care for a rare and life-threatening condition in Dublin. Evie Mae McGlynn was diagnosed with Vein of Galen Malformation (VOGM) in October, following a seizure when she was less than a month old.
VOGM is a complex vascular abnormality where arteries connect directly to veins, bypassing the usual network of capillaries. This creates a high-pressure flow of blood that can severely impact the heart, possibly leading to heart failure, pulmonary hypertension, and brain damage.
Urgent medical Intervention for Evie Mae
As her diagnosis, Evie, the twin sister of Kai, has undergone multiple surgeries and experienced two strokes, necessitating her transfer from Cork University Hospital (CUH) to Crumlin Hospital in Dublin for specialized care. The family is facing notable financial strain as they navigate the complexities of their daughter’s illness.
According to Evie’s father, Jonathan McGlynn, the past several months have been incredibly challenging. “It’s been a long few months,” he stated. “At the end of October,Evie had a seizure at home,and up until than,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.”
The rarity and severity of Evie’s condition have complicated her treatment. Mr.McGlynn explained that while blood thinners are typically used to treat VOGM, a clot on Evie’s brain prevented doctors from administering therapeutic levels, adding another layer of difficulty to her care.
“She’s had three operations so far, and has another one scheduled for next week,” Mr. mcglynn shared. “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.”
Potential Transfer to Great ormond Street Hospital
Medical professionals are increasingly concerned about the potential impact of VOGM on Evie Mae’s vision. Following her upcoming surgery, they are exploring the possibility of transferring her to Great Ormond Street Hospital for Children in England for further, specialized treatment.
To help offset the mounting medical expenses and potential travel costs associated with a transfer to Great Ormond Street Hospital, the McGlynn family launched a GoFundMe campaign. As of today, the campaign has raised over €38,000 of its €50,000 goal.
Evie Mae’s condition remains critical, but her family remains hopeful.The campaign aims to provide Evie with the best possible care and improve her chances of a full recovery.The family is grateful for the outpouring of support from the community and beyond.
Those wishing to contribute to Evie Mae’s medical fund can do so by visiting: https://www.gofundme.com/f/eviemae.
