William & Jordon
William is our April 22q Calendar Spotlight. Shortly after his birth, his parents noticed something wasn’t right.
Robin & McKenna
Robin has been a feature story for us in the past, this time we want to share how she is working the front lines helping to educate others about the COVID19 vaccine.
Amy Rogers
Amy was born a blue baby. She had difficulty feeding, frequent illnesses and cried with discomfort almost constantly. At 13 months, Amy had heart surgery to repair a large VSD and release a vascular ring.
Christine
When Christine was diagnosed with 22q11.2 deletion at the age of 30, she finally had the answers to why her childhood had been so difficult.
Jordan
Meet Jordan from Toronto, Canada!
Aine & Ciaran
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”.
Katie
Growing up, Katie achieved most of her developmental milestones on time. She walked a little later at 14 months but had already had two open heart surgeries by that time. Katie’s speech wasn’t developing as it should, so she had weekly speech therapy until she was four years old and her mother learned sign language to communicate with her.
Maddy
Maddy was born in Cleveland, Ohio and is 25 years old. She was about three months old when her family received the news of her 22q diagnosis. At seven weeks of age, Maddy had open-heart surgery
Roger
I am Roger, a 60-year-old man who was born in 1960 with DiGeorge Syndrome and the 22q11.2 Deletion Syndrome but did not receive a diagnosis until I was 43 years old!
Jeff Stalker
Jeff was born on November 23, 1992 and we immediately knew he had a cleft of the soft palate and low calcium levels. We were told that nothing else was wrong with our son.