Story by Aine Keogh
Growing up I knew I was different from other children. I had little speech until I was six years old. After a surgery on my pallet and intesive speech therapy my verbal skills began to develop. I struggled to keep up in school after missing so many lessons for doctors appointments and sick days.
As I watched others around me grow and adapt to new information I became disheartened by my pace and it was an incredible blow to my self-esteem.
In adulthood, I began to cope better with my symptoms and eventually met my partner. Before I knew it, I was expecting my son! During his first scan we discovered that he had a rare heart condition.
It was during this time that I first learned of DiGeorge Syndrome and 22q11.
My son was born in critical condition in a specalist hospital and had his first heart operation at three weeks old. We were both tested and found positive for DiGeorge Syndrome. This is a rare genetic condition which impacts the entire body. Ciaran’s life had become about hospital appointments, hospital stays, medications and surgery. But he is a gift to have, despite all of this. He lets nothing stop him. He is in a specialist school now and after three heart operations, is overcoming leaps and bounds. There is no cure, but we remain positive about the future.
If I could give advice to another parent waiting on their child’s diagnosis, I would tell them not to be hard on themselves, as it is easy to do so when you are so overwhelmed . You are doing tbe best you can with the knowledge and information that you have. And no matter what– you are your child’s main caregiver, despite all the professionals also looking after them. You are the person your child will always need the most.