15/05/2025
We would appreciate if you can share this with all your clubs in Official Antrim GAA Armagh GAA Cavan County Board Derry GAA Official Down GAA Official Donegal GAA Fermanagh GAA Monaghan GAA Tyrone GAA Ulster GAA We want to give Ben a chance. Every child deserves a chance this is his.
Do you know what Pitt Hopkins Syndrome (PTHS) is? Nope - neither did I. It is a neurodevelopment condition which causes delayed motor development and moderate to severe intellectual disability. Symptoms are caused by a spontaneous mutation in a gene called TCF4. It is an extreme rare condition of which there are only 500 cases worldwide. It only affects 1 in every 300,000.
PTHS affects 6 year old Ben, son of Niall McAleenan (St Louis Grammar School Kilkeel) and his wife Gillian. Ben is the one in 300,000! Think about that for a moment!
Ben has been accepted into NAPA London ( NAPA is neurological and physical abilitation centre) in October 2025 for intensive treatment.
As part of the fundraising effort to send Ben to NAPA Niall and Gillian will take on the iconic, long distance “Seven Sevens” in the Mourne Mountains in August 2025 with the date to be confirmed. Ben’s older brother Luke will also hike Hen mountain in Co Down. A Go Fund Me page has been set up to raise funds to help Ben avail of specialist treatment. If you can help in any way that would be greatly appreciated.
The link below is to Ben’s Instagram page ‘More Than You Know’ where you can follow his progression.
https://www.instagram.com/ben_morethanyouknow
The first link is to the Go Fund Me Page;
https://www.gofundme.com/f/bens-journey-to-1st-steps
Hi my name is Ben, i am 6years of age but when I was 4 I was diagnosed with a really ultra… Gillian McAleenan needs your support for Bens journey to 1st steps
