22q
The election for a new government in Ireland is over. One of my concerns about the short run-up to the election (4 weeks) is that some very good campaigns and "voices" were not given the chance to be heard. In particular, I really liked the #disableinequality campaign and the huge amount of good work that [...]
As we progress through Rare Disease Day, you’ll read lots of useful facts and figures about 22q. Rather than give you more of that type of information, this post is about one mother’s experience of having a child with 22q. Many thanks to Anne Lawlor for this very personal account. Many thanks to Aine for [...]
Many thanks to Sam Radford for allowing these honest words to be shared. I think that many people will see a reflection of their own experience in these words (originally posted on Medium). It is nearly two years since I first wrote publicly about my struggles with coming to terms with my daughters chromosomal disorder [...]
I think there is a lot of truth in this one. Every afternoon when walking towards my daughter's school I literally say a little prayer that she had a day without her head hurting, leg hurting, stomach hurting, or her feelings being hurt because someone teased her about the way she talks. [...]
At a recent meeting in Sheffield (England), someone reported about a girl from Ireland and her mother. The report was that they were "legends". Who were they? Here is the first blog from this dynamic duo. There was a time when I would hear a voice in my head - I sometimes thought I [...]
I guess I didn’t want to leave the warm cocoon of my mother’s belly because of all the problems in the world I would face with my health. That was evident when they found that when I exited finally the cord was wrapped around my neck. So life begins as a “blue” baby. And that’s [...]
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 [...]
