Maebhe Gorman was diagnosed with MLD (Metachromatic Leukodystrophy), a rare genetic condition affecting the brain, in November. Maebhe Gorman from Galway (2) passed away this week The heartbroken parents of two-year-old Maebhe Gorman have paid tribute to their little girl following her death this week. The toddler, from Ballinasloe in Co Galway, was diagnosed with MLD (Metachromatic Leukodystrophy), a rare genetic condition affecting the brain, in November.
She passed away peacefully on Monday, August 5, in the “loving arms” of her parents Veronica and John. A notice on RIP.ie reads: “It is with the heaviest hearts we share the sad news our beautiful, baby warrior, Queen Maebhe passed away peacefully on August 5, 2024, aged 2 years.
“Maebhe was in the loving arms of her Mammy and Daddy, surrounded by her adoring family. We are broken. “Our brave Maebhe has lost her battle but she touched so many lives in her tiny life.
We are grateful to everyone for everything over the last nine months. “Maebhe will be eternally missed by her Mammy Veronica, Daddy John, her big sister Tina, her grannies, grandads, aunties and uncles, cousins, and her huge circle of friends. “Maebhe's family would like to thank everybody for their support and prayers at this difficult time.
” Maebhe’s funeral service will take place on Thursday, August 8, at 12pm in St Peter’s and Paul's Church, Ballymacward, followed by a burial in Killaan Cemetery. Veronica and John Gorman have asked that anyone attending wears their brightest colours to the mass, which will be streamed online. The family have asked that any donations be made to Laura Lynn Ireland's Children Hospice or the Jack and Jill Children's Foundation.
Maebhe appeared perfectly healthy when she was born, and it was only last year that her parents realised something was wrong as she wasn’t hitting normal developmental milestones. “Maebhe was sent for an x-ray, and then to a physiotherapist,” her aunt, Susan Gorman, told the Sunday World last year. “She was then referred to a neurologist, who noticed an issue with her reflexes, and ordered genetic tests.
The result came back as MLD.” The disease causes a toxic build up, which attacks the melanin sheath of the nerves due to the lack of a protein, ultimately causing the nerves to die. Maebhe’s case was unique in having not one but two different faulty genes.
“As long as children with MLD are in their mum’s womb they’re safe, but as soon as they’re born, they start to deteriorate,” Susan said. “It’s a deterioration that sneaks up on you and punches you in the face.” Unlike other parts of Europe, Ireland doesn’t screen for this condition, Susan explained back in May.
“Across the EU, they screen for 40 conditions in newborns, but in Ireland, they test for just 10, of which MLD is not one,” she said. She and other members of Maebhe’s family are campaigning for the Irish Government to include MLD in the screening of all newborn children because if it’s caught at birth, a child can be treated with stem cell therapy and effectively saved. Currently the only newborns tested for MLD in Ireland are the ones who have a sibling who has already died from it.
“Research shows it can completely halt the disease. “We hope that her legacy will be that no other child ever has to go through this. That’s why we’re campaigning to have MLD tested at birth,” Susan added.
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