My son Matty has 1p36 deletion syndron it effects arround 1 in 10000 births , Matty is serverly affected and has severe developmentally delayed, although this all sounds very serious, matty loves life, and giggles and smiles all the time, loves his family and friends his food, eating is his fav passtime, especially sweets( don't tell the dentist) .
Matty has a very special group of friends who also have the same syndrome who are coming Northern Ireland in August 2013. It means so much to the families to meet up for support and even the kids who alot of them have never met another child with the same syndrome as themselves. This is the 1st time most of these families have been to Northern Ireland , so we want to show them how great our country is. Big Thanks also Sarah and Dave from Belfast parents of the fab Megan, who also has the syndrome are organising this.
We need to raise funds to give all theses kids a fab time and maybe take them on a special outing and a few treats, and make there time in Northern Ireland a memerable one, and importantly raise awareness of the syndrome.
My Fantastic Hubby George is doing an absail at the europa hotel in belfast on the 14th april 2013 (This sunday) if you could spare anthing and sponsor him , that would be fantastic.