Queen Maebhe, Our Baby Warrior

We are raising funds for Maebhe Gorman's family. Maebhe was born 7 September 2021. She was diagnosed on 6 November 2023 with a life limiting, genetic disease called:

Metachromatic leukodystrophy late infantile form (M.L.D) https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/metachromatic-leukodystrophy-late-infantile-form/

There is no cure for Maebhe's disease.

Maebhe was born into a very loving family. Her Mum, Veronica, her Dad, John, and her happy and funny, 4 year old big sister, Tina.

Initially Maebhe appeared to be developing normally until the age of 9 months. Her beautiful smile, gentle, and fun loving personality lit up every room she was in. At this point she began to miss developmental milestones. Clinical and medical interventions began at this stage.

Maebhe was diagnosed in Temple Street in late 2023 with M.L.D. As M.L.D is so rare, the neurologist was surprised by the results and Maebhe's family were unaware of the disease and prognosis.

Neurologists in Temple Street indicated a probable life expectancy of a further 3 years, with the added caveat to treat every Christmas as her last. Anyone can imagine this diagnosis has been devastating for Maebhe's immediate and extended family.

Our family is still shocked, there is an urgency to provide Maebhe with life-enhancing equipment and adaptations to the family home. (Everything comes at a great expense. We are unable to cover the costs solely within our family) Our main priority is to raise funds towards a wheelchair accessible vehicle.

Maebhe's medical care is shared between Portiuncula Hospital, Ballinasloe, Galway University Hospital, Temple Street Hospital, Dublin, and the Children's Disability Unit in Loughrea. At present this requires extended and frequent travel in a vehicle that is unsuitable for Maebhe's needs. As Maebhe deteriorates, her medical appointments will be more frequent, with the requirement of additional medical care equipment.

Maebhe's Dad, John, suffered an acquired brain injury as a result of a road traffic accident at the age of 24. His injury was further complicated following 4 severe strokes. As John's family we truly believed he had survived the most catastrophic events of his life. We could never have imagined what horror lay ahead for him.

Maebhe's Mum, Veronica, is from a loving and supportive family, but they are in Brazil. Veronica is a wonderful addition to our family but for her to navigate this family tragedy in a second language, and without the continued physical support of her own Mum and Dad has been extremely challenging for her. Veronica's Mam was visiting during the period they travelled to Temple Street hospital to hear the awful news. She continued to be a pillar of strength in the initial weeks following Maebhe's diagnosis. We would hope she can return to Ireland in the next six months.

Please donate as generously as you can afford. If you are unable to donate, could you please share our campaign with anyone and everyone you know!

Your kindness and generosity would be life changing for Maebhe and her family. We will continue to update this page. We have a number of fundraisers planned for the near future.

For those of you with faith your prayers for Maebhe and her family would be most welcome.

Thank you for taking the time to meet our beautiful Maebhe and learn more about her crushing condition.