stories

Alannah

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Alannah was born on 7th May 2006 after a normal pregnancy and very fast delivery. All appeared fine and we were thrilled with our little girl. She didn’t feed that well in her early months and the GP was a bit concerned about her weight which was “yo-yo-ing” but despite various checks with various medical […]

Elise

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I’m Elise and I was diagnosed with Deletion 22q when I was 7 months old. My first 7 months of life were difficult and I ended up being flown into St. Louis Children’s Hospital with two respiratory infections. There, a team of doctors began genetic testing and found that I had Deletion 22q and that […]

Noah

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Noah is five years old and one of the most amazing children I have ever met! Some of Noah’s favorite things include riding his bike, swimming and playing mini golf! When I had Noah he was 7 pounds 7 ounces and healthy as could be! It was around six weeks old that Noah first got […]

Leah

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Leah Ryan is now 17, and amongst other things she has experienced learning difficulties and problems with fine motor skills since she was a baby – but was only diagnosed with a mild form of the 22q11.2 deletion syndrome when she had just turned 12. Her parents have ignored any temptation to push her towards […]

Amy

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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 […]

Jeff

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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. We took him home on Thanksgiving Day that year and he immediately began having feeding problems. We struggled with these feeding […]