A TERMINALLY ill tot has tragically died this week following a long fight with an incurable illness, leaving her family "broken". Maebhe Gorman, 2, from Galway tragically passed away on Tuesday, August 5, after fighting the cruel disease for nearly a year. In November 2023 Maebhe was diagnosed with a life-limiting genetic disease named Metachromatic leukodystrophy late infantile form.
Her parents Veronica and John Gorman have been left "broken" according to an update shared on the GoFundMe page dedicated to Maebhe's treatment. The heartwrenching update read: "It is with the heaviest heart we share the sad news our beautiful, baby warrior, Queen Maebhe passed away peacefully yesterday. "She was in the arms of her Mammy and Daddy, surrounded by her adoring family.
"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 9 months." They added: "Funeral arrangements will be shared on RIP.
ie tomorrow. We will be taking the next couple days to spend together as a family with our beautiful Maebhe." Maebhe was diagnosed in Temple Street in late 2023 with M.
L.D, which affects mostly the 'white matter' of the brain, causing a progressive loss of physical and, later, mental skills. Due to MLD's rarity, the neurologist team were surprised by the results and Maebhe's family were unaware of the disease and prognosis.
At that time neurologists in Temple Street indicated a probable life expectancy of a further three years, however baby Maebhe, who was only born in 2021, could not fight any longer. In July, her aunts Carol and Susan spoke out about how the diagnosis has had an irreversible impact. They said: “She was a normal two-year-old in November 2023, but now she is paralysed from the neck down.
“She can still move her head but she is on heavy duty medications. “Unfortunately, she remains in pain despite all the medication – she screams so loudly in pain and it is constant. She never cried before but she is constantly in pain.
"There was no explanation for this disease – she was just missing milestones – maybe the child is slow to walk or walking more on one side than the other but then the parents are sat down and told their child is dying. “Because she has it on two separate genes, we have no indication on what the future holds." In the past few days Maebhe's parents have been faced with a conversation no parent wants to have - about their daughter's end of life care.
Speaking to the Herald in May, her aunt Susan stated: “The most tragic part of Maebhe's story is that her death is entirely preventable. Maebhe is needlessly dying. There is a treatment for her illness (Lebmeldy), but the Government refuses to test for MLD.
Maebhe's illness tears her limb from limb, invisibly and insidiously.” She called for the illness to be included in the screening of newborns as it is in many other countries. “There is treatment but you have to get it before the symptoms start showing.
The Catch 22 is only when symptoms start showing do people start looking to see what the cause is.” According to the GoFundMe page written about Maebhe, "Her beautiful smile, gentle, and fun loving personality lit up every room she was in." They have raised over €34,700 to cover the medical expenses and care of baby Maebhe and now hope for the proceeds to cover funeral arrangements.
They continue to further their campaign to have MLD included in the heel prick test at birth so that other families will not have to endure what they are..
