Margo joined the IDefine team in the summer of 2020 to lend her communications expertise and experience as an advocate for her daughter to further the mission of finding effective treatments and support for individuals and families living with KS.
In Margo’s Words:
Tell us about the person you love who was diagnosed with KS.
My daughter Adelind is the light of my life. She has never met a stranger, and she spreads joy all over the place. She is curious, loving, and pure of heart. Addie surprises us every day with her ability to master new skills, and we expect great things from her.
When did your child receive a KS diagnosis?
Addie is 7 and after many years of searching for an answer, she was diagnosed at age 5 using whole exome sequencing.
What resources, outlets, communities were most helpful to you at that time?
UNC Hospitals provided us with the diagnosis, and then we did a lot of digging to uncover scarce resources about KS. Groups like Unique, KS.org, and KidsIQ helped us find a community of families that share our challenges. Early intervention services like occupational and speech therapies from our school system helped Addie build a foundation for success.
How has KS changed your life as a family?
Every small step of progress is cause for celebration — we don’t take anything for granted in our house. Whether it’s learning to read, singing a song, or having a good conversation, we are grateful for every gain. We also look for family activities that challenge Addie and gently nudge her out of her comfort zone so she can build confidence.
What is your biggest hope for the future?
It’s pretty simple and probably what every parent wants for their child — we hope that Addie will live a healthy, happy, productive, and independent life as an adult.