Meet the girl
who inspired our mission
Hi, I am Macie!
My mom and dad call me 'Macie girl'.
If you met me in person, you might not hear me speak. You wouldn’t see me walk, run, or play the way others do. But you would see my smile. You would fall in love with my giggle. And you would feel the love I have for those who love me, care for me, and celebrate the beautiful, unique abilities that make me who I am.
Our Macie Girl
Macie was born in February 2019, a beautiful baby with the sweetest chunky rolls just waiting to be squeezed and kissed. As she grew, she reached all the typical milestones. She grabbed for toys, responded to our voices, rolled around on her playmat, and even said “hi” and “momma.”
Until her first birthday, Macie’s future seemed like it would follow a familiar path like her older brother. Then things began to change quickly. She started losing skills, regressing, and stopped gaining new ones. By the age of two, after many questions and concerns, her genetic doctor gave us the diagnosis of Rett Syndrome.
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With broken hearts, very little information, and no roadmap for what came next, we stepped into a new phase of life filled with uncertainty.
Fast forward to today, Macie is a loving seven year old who absolutely adores attention. She is a warrior in every sense of the word. She doesn’t sweat the small stuff, welcomes new faces, and lights up the world with her giggle. She loves swimming in the pool, splashing in the bathtub, and watching her favorite movies like Bolt, Zootopia, and Toy Story.
Macie has changed the way we see the world. She has introduced us to a community we never knew existed, filled with extraordinary children and families. Most importantly, she has given us a purpose to give back, raise awareness, and support a community of children who may love differently, but love just the same.
“Macie’s Mission is built on love, fueled by hope, and dedicated to creating a brighter future for children who face life’s greatest challenges with extraordinary strength.”
Our purpose
Macie's Mission Foundation is dedicated to improving the lives of those in need. We focus on providing resources, support, and advocacy for underserved communities, ensuring everyone has access to essential services and opportunities for a better future.
Rett Syndrome
is a debilitating condition. Macie has lost the ability to walk, talk, and use her hands, and like many Rett warriors, she relies on caregivers for daily needs. Yet, there is hope. Thanks to decades of fundraising and research supported by organizations like the Rett Syndrome Research Trust (RSRT) and International Rett Syndrome Foundation (IRSF), significant breakthroughs have been made; including identifying the MECP2 gene, discovering reversibility in animal models, advancing gene therapy research, and establishing Centers of Excellence across the country.