Hello! I’m so glad you’re here!
My name is Summerly & this is my blog, my website, my outlet and foundation. My daughter, Izzy Snow, is the inspiration behind it all as she was diagnosed with 22q11.2 deletion syndrome at 22 days old. While her dad and I were not familiar with this diagnosis, we quickly became very aware – aware of the facts, aware of the scares & challenges, and aware that a lot of people aren’t aware.
In July of 2021, we sat in Izzy’s hospital room for 18 days feeling overwhelmed, scared, sad, anxious, nervous, guilty, confused, tired, numb, and unheard, but that September, as we drove to one of her outpatient appointments, we decided to turn those negative feelings into something positive. So… a conversation became an idea, and here we are.
A diagnosis may define a lot, but it doesn’t define love, and it doesn’t have to define life. My mission is to raise awareness that this disorder needs but severely lacks, to educate others & help diagnosed families cope, and to pay it forward to the genetics division of Akron Children’s for expansion in research & services, as genetics is the least profitable aspect of any hospital but one of the most important aspects of our Izzy Snow.
22q11.2 is not just random numbers & letters. It is someone’s story, someone’s life, someone’s face. And for our family, it is Izzy.
She is our 22q11.2 cutie,
my 22qt.
