The family of a young Galway girl diagnosed with a rare disease who called for the introduction of routine testing for the illness have announced the death of their ‘queen’ daughter Maebhe. Maebhe Gorman was diagnosed with a rare inherited condition shortly before her second birthday last year with trips to physiotherapists and doctors in Galway and Temple Street Hospital, Dublin, revealing that the tot had Metachromatic Leukodystrophy (MLD), which causes the progressive loss of physical and mental skills. Maebhe passed away on Monday, August 5, 2024, in the arms of her parents, Veronica and John, surrounded by her heartbroken family, aged just 2 years old, with the GoFundMe set up in the tot’s honour confirming that her family were broken following the tragic news.
The ‘beautiful little angel’ is survived by her parents, big sister Tina, her grannies and granddads, aunties and uncles, cousins and a huge circle of friends. Her RIP.ie death notice reads: ‘It is with the heaviest of 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.’ It continued: ‘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.’ Friends and parents posted tributes to the ‘brave’ youngster following her devastating death, branding the tot ‘beautiful’ and a ‘true queen’, with one mum writing: ‘Darling Maebhe, you will be a bright, beautiful Angel in the heavens above, all our little Angels will delight with your presence.
watch over your parents and family and shower them with your love.’ A family member who never got to meet the tragic toddler commented: ‘Even though we never got to meet the beautiful Maebhe, we followed her long battle. No words I can say will be of comfort to John and Veronica and all my dear cousins, only to say that you are all in my thoughts and prayers at this sad time.
.. Maebhe, rest in eternal peace.
Thinking of you all at this time,’ while a third said: ‘As a father of a baby girl, my heart is broken for your loss. May your beautiful little girl rest in eternal peace in the loving arms of the angels. God bless you all.
’ Maebhes service of the angles will take place in St. Peter’s & Paul’s Church, Ballymacward, Co Galway , on Thursday, August 8 at noon, with burial in Killaan Cemetary following the funeral. The 2-year-old’s parents have asked mourners to wear their brightest colours in memory of Maebhe, who brought so much light into every life that she touched.
Her RIP.ie death notice added: ‘Mass of the Angels will take place on Thursday the 8th of August at 12 noon in St. Peter’s & Paul’s Church, Ballymacward (H53 YH60).
Burial afterwards in Killaan Cemetery. ‘Veronica and John have asked anyone attending to wear your brightest colours. ‘Maebhe’s family would like to thank everybody for their support and prayers at this difficult time.
’ Speaking to Rollercoaster, Maebhe’s aunt Carol said that it is too late for treatment of the cruel disease once symptoms begin to appear. ‘The terrifying thing is that there are children in Ireland walking around with MLD, and no one knows,’ said Carol. ‘They don’t know.
They have no idea. I mean, it can hit you after the age of 15.’ The family have launched a campaign in Maebhe’s honour, demanding that all children born in this country undergo routine MLD testing.
‘We don’t want Maebhe to die in vain.’ She said. ‘If she could save two children a year.
’ ‘It’s not that her death’s going to be easier. It’s not going to make our lives better.’ ‘But it’d be good to know that because of her living for such a tiny little period, she went on to save two children a year.
’ she said..
