Aine Keogh and her son, Ciaran, were both born with 22q11.2, which she quotes as the “most common rare syndrome you’ve never heard of”. Aine had a lot of the textbook symptoms growing up and had become used to dealing with them in her own way. The main symptom that impacted her daily life was speech delay, which was caused by a cleft palate. According to Aine, her everyday life was tough due to the delay, and she eventually had cleft palate surgery at the age of 6. Her surgery was followed by intensive speech therapy. Following surgery, her life became somewhat easier, but she did tend to get sick more often than her siblings and she always wondered why. You see, even know Aine was born with the condition; she did not get diagnosed until the age of 21. At the time of her diagnosis, doctors and consultants did not know much about 22q, which made Aine’s world shatter.

Aine’s son Ciaran is 12 years old and has 22q. Once Aine learned that Ciaran had it as well, she was determined to do her own research and make a better situation for them both. Aine took it upon herself to join support groups (Max Appeal, 22q Ireland, 22q Northern Ireland) and through these online groups they met amazing people who suffer from the same challenges. Aine has learned through the support of her new 22q friends that this diagnosis does not define you and she strives to continue to raise awareness and turn her situation in a positive for both her and her son. Ciaran was born with a serious heart condition and has had to endure 10 surgeries throughout his life. He also has had a cleft palate surgery and struggles with a global development delay, speech delay, and low immune system – which are all symptoms of 22q. According to Aine, “Ciaran has come along so well in so many ways and does not let anything get him down”. Ciaran, as recent as July 2020, had an open-heart surgery and had major complications where he ended up on life support. However, with the power of prayer and strength, Ciaran pulled through and is home with his family today. He was able to graduate from primary school back in September, which is a huge accomplishment, and we know that he will continue to thrive with the support of his mom.

Aine is 33 years old, and currently resides in Northern Ireland. She has passed her level 2 and 3 diplomas in childcare, and her goal is to help other children who have special learning needs since she understands what they go through daily. She is learning to drive and is working to overcome her anxiety. Even though there are still going to be a lot of things that they will have to face in the future in regards to Ciaran’s health needs; they know that with the help and support they will both get through it!