Hi, My name is Amy and I am fundraising for my 3 year old son MJ. He has a rare genetic condition called 1p36 Deletion Syndrome. This comes with an intellectual disability, developmental delay, cardiomyopathy, seizures, kidney issues, poor growth, hypotonia, sight and hearing problems, skeleton deformations to name a few.

Last year,we travelled to Scotland where we attended the 1p36 Family Trust conference. We got taught by Geneticists, Paediatricians and a Behaviouralist about MJs condition, what it is and what our future may look like. All of these wonderful professionals travelled from the USA and thanks to them, 13 months after MJs diagnosis, I finally got some of the answers I needed, and the answers my son deserves.

I now aim to attend the 1p36 Deletion Support and Awareness Conference in Seattle, Washington in July 2026 to meet with more professionals who can teach me how to best help MJ and manage his diagnosis as well as return to Ireland to spread awareness and education to MJ's current medical team and other families with his diagnosis. I also intend to get MJ into a clinic at Cincinati Hospital where doctors who research and study 1p36 will liase with Crumlin Childrens Hospital to provide the most accurate medical care for MJ. As it stands, this is miles out of our financial capacity as a family with only one working parent as I am MJs full time carer. Any help at all would be so greatly appreciated from the bottom of our hearts ❤️