LOUISE AND ALICE'S STORY
What 22q11 Ireland means to us.
Alice was diagnosed with 22q11 deletion syndrome in October 2011. Two weeks later 22q11 Ireland were hosting their annual conference in Dublin. Myself and my husband Paraic travelled up that day and for the first time I got an idea of what this syndrome was all about. We met parents and children of all ages that are affected by 22q. It was all so new and raw for us. It was an emotional roller-coaster.
I was so overwhelmed by all the support and advice. My tears could have filled the room that day. At one point Anne Lawlor came over to me, held my hand, looked into my eyes and said “what you are feeling is normal”. I’ll never forget that moment. From that day on, I knew we were part of a great group.
Roll on 5 years later, I have seen how 22q11 Ireland have worked tirelessly to create awareness for 22q11 deletion syndrome. Although there are some excellent professionals in Ireland, specific knowledge of the syndrome is limited. 22q11 Ireland always source the very best international expertise on 22q so parents have the knowledge to better the life quality of their children. The 22q11 Ireland conferences and family get-togethers every year are so important for 22q individuals and their families. The support and knowledge that comes from these events can never be underestimated.
Whatever Alice’s needs will be at whatever stage of her life, whether it’s physical, psychological or emotional, knowing 22q11 Ireland will be there is incredibly reassuring both for her and us. They are a lifeline to so many families and individuals with 22q11 deletion syndrome. It may be a small group but it is mighty and it will never give up the fight for a better, brighter future for everyone affected by 22q.
Louise O’Regan (mother of Alice O’Regan)
Alice's Grandparents recently celebrated 50 years of marriage and asked friends and family to donate to 22q11 Ireland in lieu of gifts.
An incredible €1,000 in total has been donated along with some of the most inspiring and motivating testimonies we've ever had.
Here's what they had to say " Please find enclosed a donation from us for the continued work and support network provided by 22q11 Ireland, it is invaluable to those families affected by 22q. Hopefully the thoughts shared by our daughter Louise whose daughter Alice was diagnosed with 22q in 2011, express what you mean and the impact you have. We thank you and wish you continued success."
We wish Anna & Terry many more happy years together and hope they enjoy Alice's lovely picture as much as we do.
(She's sharing a painting of where they celebrated their golden anniversary in Castle Durrow)