Shaylee Munce

This August, I’m skipping to raise money for 6-year-old Adeline and other rare kids just like her.

I was lucky enough to meet Addie and her beautiful family in 2023 through my support work, and I’ve had the privilege of watching her grow ever since. She has the cheekiest little personality, the biggest smile and brings so much joy to everyone around her. Despite everything she faces every single day, she’s one of the strongest and most resilient little girls I know and she never fails to amaze me.

Adeline lives with CDKL5 Deficiency Disorder (CDD), a rare and severe neurological condition that causes constant seizures and significant disabilities. She can’t sit, walk, talk, or use her hands, is legally blind and relies on support for every part of her daily life. So many of the things most children take for granted simply aren’t possible for Adeline.

She had her very first seizure at just two weeks old, and now, six years later, she still hasn’t experienced a single seizure-free day.

CDKL5 is caused by a spontaneous genetic mutation. It isn’t inherited, and there was nothing anyone could have done to prevent it.

While there isn’t a cure yet, gene therapy research is giving families real hope. Over the next decade, it has the potential to completely change the future for children diagnosed with CDKL5.

If you’re able to donate, share my fundraiser, or even just help spread the word, it would mean so much. Every contribution, no matter how big or small, helps support research and brings hope to families like Adeline’s 🫶🏼