My name is Aine, I am 33 years old and I live in Ireland.
I was diagnosed with 22q11 at 21 years old. Growing up I had textbook symptoms, I wasn't reaching key milestones and had a cleft palate which caused severe speech delay.
I had cleft palate surgery at 6 years old followed by intensive speech therapy. My speech soon developed well. Growing up was hard, I couldn't keep up in school and fit in as well as my peers or my siblings. I missed a lot of the primary school years due to infections. I struggled in school, especially with math. I was bullied throughout my school years, but it has only made me stronger. Anxiety has an impact on my life as well as kidney issues and ear, nose and throat infections, but I have learnt to deal with my issues and I can cope well in my own way. I have my own home with my partner and son. I also passed my level 3 diploma in childcare and my goal is to help other children with different needs.
I am a full time carer for my son Ciaran. He was born in 2008 and was also diagnosed with 22q11. He was born with a rare heart condition. It was a shock, but a huge relief to learn about 22q as we had an answer. It was the beginning of another long journey for us all and especially for Ciaran. He had his first open heart surgery at 3 weeks old. It went well and he got home after 3 months just in time for his first Christmas!
He was our miracle baby, however, he was a very sick boy spending his baby years in and out of hospital with chest infections. Ciaran goes to a special needs school (even if he has not been for the past year due to the pandemic), but he has come on leaps and bounds over the years and is achieving things that doctors said he never would. Ciaran also has a cleft palate and had surgery at 9 years old, he still has a speech delay, but is working hard with his speech therapist.
He is 12 though has global developmental delay .He is a funny, mischievous little boy and loves to make others laugh. There isn't a day that goes by that he does not make us smile. He loves superheroes and doing videos for his YouTube account ! Ciaran loves his life and is very loved. He has had 11 operations to date and has a big fight on his hands at the minute while he is in ICU after his 4th open heart surgery. There have been a lot of complications, but he is still fighting. Ciaran has the strength of a lion. He has been a blessing and it's thanks to him that I got my diagnosis. We will continue to help him fight, it's not easy, but seeing him smile again is worth it all.