Lily smiled at us when she was put in my arms after a text book delivery. She grabbed onto Daddy’s finger and became “his girl” immediately. At 2 weeks old for Lily we moved from the coast of South Carolina to Southern Ohio for added family support.
She has always been pretty happy and we got Lucky when Lily was 6 months old, noticed missing some milestones and referred to PT for torta collis and plagiocephalcy. At 1 year old, our PT helped refer us to genetic testing. Lily has a Deletion on her 22nd chromosome at the 22q13 area and mutation on the Shank3 gene.
From there we were on the journey of unknown and Lily is our tour guide.
Many people diagnosed experience symptoms of:
Developmental and speech delays or no speech
Autism spectrum disorder
Compromised immune sy5
Body temperature regulate issues
Trouble sleeping cycles
Low muscle tone included in eyes and stomach internally.
Currently around 2000 diagnosed worldwide. Working together for research with therapies, diets and Awareness for more inclusive activities in schools and communities.
With early intervention of speech, PT, OT and ABA, it gives each family a way to learn there are other ways to communicate and show love. We are LUCKY to have one of the happiest kids thanks to our “team”. Lily has taught us all of us to live life happy each day! Do things that make you happy!