ABOUT THE 22q JOURNEY
Your child being diagnosed with 22q is the start of a potentially bewildering journey and you will need lots of support. You will have many questions right from the start and again every time something changes, like when it’s time for school or maybe if a different symptom emerges. There will be questions about your child’s medical issues, about coping with those who know nothing about 22q, about education, about your family, your fears and anxieties, and so on. And of course you will have concerns about what the future may hold.
We don’t have a crystal ball to tell you everything about how 22q11.2 deletion might affect your child, only time will tell his or her individual story. What we do have however are the fantastic families that go to make up this group. Here you will find stories of achievements and hear about how our children, adolescents and adults are living their lives well. Our aim is to help our children live into their own abilities to live their own lives. They all have gifts, strengths and capacities and with the right supports can achieve their potential.
Our families have all been where you are now and they are all experts by experience. We, the parents and families in the group, are out own best resource and our collective wisdom and experience is quite impressive! We share information, tips, resources and our expertise with good natured humour and the recognition that together we are better.
This 22q journey is a different one than the one you have been on but it is not one you will have to make alone.
There is support and information to help you, there are within this wonderful Irish 22q community people who have trod the path before you and who are only too willing to reach out a hand or a listening ear when you need it. So welcome, welcome to our 22q Family. We are here in times of real need or for your simple questions. You are not alone.
Professional looking for medical information? We recommend The International 22q11.2 Foundation Inc
Ireland's National charity for children and adults diagnosed with 22q11.2 Deletion Syndrome. DiGeorge Syndrome and VCFS.
All clinics (including our 22q clinic) in Our Lady's Children's Hospital Crumlin are cancelled at present. At this point in time we don't know when they will be up and running again.
Please note that if you have concerns you should still attend or contact the hospital as there is a concern in the hospital that children aren't being brought in when sick as parents are fearful. If you have concerns you can contact the hospital. Dr. Kelleher's secretary's number is 01 4096824.
The HSE website for more general info is: and remember to only take
information from official sources.
If anyone has extra concerns they can contact Anne (087 7412856) and she will do what she can to help