Around 12 babies are born every year with a genetic deletion syndrome called 22q11.

Áine Lawlor and her mother Anne talk to Fiona Tyrrell about life with the syndrome.

Click here to read the article in the Irish Times

Well, my daughter Aine and myself happened to meet Derek and Margaret Curtin at the Max Appeal conference in Leicester. Julie Wootton had asked Aine to speak. We thought that the conference was great but felt that we really needed our own group here in Ireland. It was an idea waiting to happen really, it just needed someone to pick it up and run with it. We had professional backing too, at our first few meetings we had professional doctors - Dr Sarah Prasad & Prof. Kieran Murphy in attendance. Then Grainne Mooney, bless her heart, no connection to the syndrome at all, decided to give of her time and came on board and has been brilliant.

We decided to hold a conference to gauge the need for a group. Julie told us if we invited 80 we would get 40. We needed to raise funds - so Aine's brother Peter got some of his friends together for a parachute jump and we got some local sponsorship for that. I'd like to thank them actually, Dave the butcher, Michael the chemist, Martin, fruit and veg, and all the others who sponsored the lunatics, sorry, jumpers.

We put the wheels in motion then to register the group as a charity, and put a plan in place to get the group up and running as a professional Charity and Support organisation.

Bank of Scotland Ireland very kindly offered to donate funds to draw up the logo and create a website and we would like to thank Rhona in BOSI for her ongoing support and advice.

In addition - we are very fortunate to have Ken Doherty, Ireland's best ever Snooker Player and one of our most treasured Sportsmen to be our Patron. Ken has been brilliant and I would like to take this opportunity to publicly thank him for his ongoing support and generosity.

Since then we have had a couple of family days and slowly but surely we are all getting to know each other which is great. This is what the whole thing is about really, mutual support. I really really hope that the families benefit from having a support group and that together we can make it a great one. Whatever it is that our children need to become all that they can be, they deserve the opportunity to have it.

Anne Lawlor, Chairperson