Shaylee Munce

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

I was lucky enough to meet Adeline and her beautiful family in 2023. Since then, I have been fortunate enough to watch her grow and bring happiness into the worlds of everyone who knows and loves her. Despite her challenges, Adeline is one of the most resilient little girls I know and her strength continues to amaze me everyday.

Adeline lives with CDKL5 Deficiency Disorder (CDD)—a rare and severe neurological condition that causes constant seizures and significant disabilities. Adeline can’t sit, walk, talk, or use her hands. She is legally blind and needs full support with every part of daily life. Adeline sadly can’t do most things kids her age can do.

Adeline had her first seizure at just 2 weeks old, and 6 years later, she hasn’t had a seizure-free day since.

CDKL5 is caused by a spontaneous genetic mutation — it’s not inherited, and it can’t be predicted or prevented.

There’s no cure yet. But gene therapy is offering real hope. Over the next decade, this research could change everything — if not for Adeline, then for future children born with CDKL5.

By supporting this fundraiser, you’re helping to give these kids and their families hope.

Every donation, share, or kind word makes a difference 💜