In this section we would like to share the stories of those living with the 22q11 deletion and their loved ones.
Just like no two of our children are alike so are no two of our stories and within each tale there is a wealth of information and a shared realisation that none of us is alone. We recognise each other in our stories and realise the enormous benefits of belonging to this small community of ours. Please share your stories. If there are any young adults living with 22q who would like to talk about their experiences please do likewise, there is so much to be learnt from listening to you.
These stories can be submitted to firstname.lastname@example.org.
If you would prefer to the stories can be submitted anonymously.
However you choose to submit them they will be treated with respect.
There was always something wrong with my daughter, she was always sick, always struggling to do things that other children did so easily. Everything came late, walking, talking, running, she never climbed, rarely injured herself in the rough-and-tumble of play because there just was no rough and tumble. I remember the first year of her life in particular; she had an antibiotic practically every month. From then on in it was frequent visits to the doctors and hospitals, she suffered especially with ear and throat problems. And the thing was, she was born perfect, a really pretty baby and even won a bonny baby competition once. READ MORE
Kids with 22q need to believe in themselves and they need to believe in their dreams, their goals. They need to believe that they can have a life like everyone else, get married, have kids and have a job. They need to believe in themselves. They need to believe that they can do well in school – they can go to college and get an education. READ MORE
Sarah chose to read this speech out at the VCFSEF Scientific Meeting.
The entire committee and most of the audience were incredibly moved by what she chose to say. READ MORE
Our Children as Teachers.
I have known of 22q11.2 Deletion Syndrome for only 7 years but my experience has been an eye opening one! I used to get annoyed at the person who was taking too long at the checkout in a shop or the person who didn’t seem to know where they were going and slowed me up in the process or the person who rang me in work (I work in pensions) to ask me what they are paying for, after all I thought to myself “How can anyone not know what they are paying for?” Then in 2004 I began my journey with 22q and it soon became obvious to me that we are all living with disabilities to varying degrees. READ MORE
Sophie will always have 22Q and our journey with her will be on going for life. 22Q affects people in many different ways. There are many Doctors who still have no idea of this syndrome, we as her parents now know more than the professionals. READ MORE
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. READ MORE