In July of 2021, Summerly and her husband sat in Izzy’s hospital room for 18 days feeling overwhelmed, scared, sad, anxious, nervous, guilty, confused, tired, numb, and unheard, but in September, as they drove to one of her outpatient appointments, they decided to turn those negative feelings into something positive. So… a conversation became an idea, and they created a website www.my22qt.com . Their daughter, Izzy Snow, is the inspiration behind all of this 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. A diagnosis may define a lot, but it doesn’t define love, and it doesn’t have to define life. Their mission is to raise awareness that this genetic 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 Hospital for expansion in research & services, as genetic departments are the least profitable aspect in the medical world. Summerly states that 22q11.2 is not just random numbers & letters. It is someone’s story, someone’s life, someone’s face. And for their family, it is Izzy. She is their 22q11.2 cutie.
•••••••••••••••••••
Within this episode we discussed:
If you would like to contact the 22q Podcast with any questions, comments or if you are interested on being on this podcast email Becky at 22qpodcast@gmail.com. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.
Instagram - @22q.podcast
Facebook - @22qpodcast
Email - 22qpodcast@gmail.com
#22qpodcast
