03/10/2022
** Copied from Kaitlyn Marchant **
I'm so excited to be helping her spread awareness
Our shirts are ready to order!! Please allow up to 2 weeks for processing and delivery.
If you would like to order a shirt, please message Kayla Brown Conner. Kayla has been amazing through this whole process of helping me create a beautiful message for our shirt.
I am in the process of creating a nonprofit in which the proceeds will be sent to Greenwood Genetics for further research to allow more awareness for Alex’s syndrome.
Most of you are aware, but if you are new, long story short is that our son was born with a very rare genetic disease that only affects 1 in 250,000 people. I am creating this awareness because it will help others who have never heard of his syndrome understand (especially doctors and therapists!) that he is and will always be our strong boy - no matter how “different” anyone else thinks he is!!
Being different doesn’t mean you’re weak - in fact, it’s quite the opposite.
If you would like to learn more about please click the link below:
https://www.chop.edu/conditions-diseases/johanson-blizzard-syndrome
Thank you so much for your support, and as always, thank you for loving our Alex!! We couldn’t do it without you!!
💕
Learn more about Johanson-Blizzard syndrome and how it's treated at Children's Hospital of Philadelphia (CHOP).