Last month, on May 22, we went to our very first 22q at the Zoo Awareness Day event! This event is organized by the International 22q11.2 Foundation and by hosts at local zoos worldwide to connect individuals with 22qDS and their families and to spread the word about 22q. Families participating in 22q at the Zoo… Continue reading 22q at the NC Zoo 2016
Today we are off to the 22q at the Zoo event at our local(ish) zoo. 22q at the Zoo happens every year on May 22 as a chance for 22q families around the world to get together with their 22q neighbors to socialize and raise awareness. Find us on Instagram to see what we’re up… Continue reading Spread the Word about 22q!
We moved here in December and after the evaluation process with our new early intervention organization and new therapists and new insurance, blah, blah blah, Henry’s in-home therapies are finally starting this week. He has been in feeding therapy since about February, and Calvin’s process with the public school district went a little faster since… Continue reading Therapy Schedule in Full Swing
Calvin turned 4!! And I’m calling this my 22q awareness post for this month 🙂 My oldest son, Calvin, was born with 22q11.21 Deletion Syndrome – meaning that he is missing a teeny tiny section of genes on his 22nd chromosome. 22q DS is not all that uncommon, and has gone by several different names… Continue reading CalBean Birthday!
The type of speech therapy that Calvin does is called articulation therapy. He needs help working on pronouncing sounds and words. His language and vocabulary seem to be pretty on track for his age. He talks in full sentences, he carries on conversations, he can go on and on about his favorite dinosaurs… the only… Continue reading Memory Game Articulation Practice
I love finding adults with 22q deletion who are out there giving us a glimpse into their lives by sharing their stories, and giving hope to moms like me raising young kids with 22q. Which is why I’m so excited to introduce Amanda Ripsam! Amanda is a writer, motivational speaker, and 22q advocate. On her blog, Mommies Quiet… Continue reading Meet Amanda! Blogger & Motivational Speaker with 22q Deletion
Today on Rare Disease Day, I invite you to learn more about 22q deletion syndrome and dup15q syndrome! Let’s start with 22q! 22q deletion syndrome is not all that rare! It is the second most common chromosomal syndrome after Down Syndrome. With Down Syndrome, there’s an extra copy of chromosome 21. With 22q deletion, chromosome… Continue reading Rare Disease Day: Get to Know 22q and Dup15q