Fundraising Effort Underway for Irish Baby Girl with Rare Brain Condition
A fundraising campaign has been launched to help Evie-Mae, a four-month-old girl from Cork, Ireland, receive specialized medical care in the United Kingdom for a rare and life-threatening brain malformation. Her parents, Jonathan and Caitriona, are seeking to raise funds to cover the costs of treatment not readily available in Ireland.
Understanding Vein of Galen Malformation
Evie-Mae was diagnosed with a Vein of Galen malformation, a rare condition affecting approximately one in one million babies. This malformation involves misplaced blood vessels that cause blood to flow too quickly and at high pressure, placing a significant strain on the heart and brain Irish Mirror. In newborns, this can be life-threatening and often requires multiple specialized procedures.
Evie-Mae’s Medical Journey
Born in September alongside her twin brother Kai, Evie-Mae was initially home for about eight weeks before experiencing a seizure. This prompted her parents to seek immediate medical attention, leading to her transfer from Cork to Crumlin hospital. Since then, she has undergone four surgeries Irish Mirror.
Recent CT scans have presented challenges, with artifacts from previous embolization procedures hindering clear visualization of the malformation. Evie-Mae currently has a catheter in place, preventing the use of MRI scans for further assessment Irish Mirror.
The Need for UK Specialist Care
Jonathan explained that a key concern is the potential loss of brain plasticity if treatment is delayed beyond nine to twelve months. The family is seeking access to a specialist in Great Ormond Street Hospital in London, who has over 20 years of experience treating Vein of Galen malformations Irish Mirror.
Currently, the Irish government does not fund travel to the UK for treatment when surgeons in Ireland are willing to perform the procedure. This necessitates the family to self-fund the costs associated with seeking specialized care abroad Irish Mirror.
Angiogram: A Crucial Diagnostic Step
The UK specialist can perform an angiogram, a minimally invasive diagnostic procedure that uses contrast dye to visualize blood vessel narrowing. This procedure is not currently available in Ireland for several months, potentially delaying critical assessment and treatment Irish Mirror.
Community Support and Fundraising
A GoFundMe campaign has been established to support Evie-Mae’s treatment, and has raised over €41,047 of its €75,000 target Irish Mirror. Jonathan emphasized the profound impact of this support, noting that he has been out of work since October.
“It’s different when it’s your own child, you’d do anything for them,” Jonathan said Irish Mirror.
To donate to the fundraiser and help support Evie-Mae, click here.