Meet Madelyn

Madelyn Grace Kirby

Maddie was born in August 2016 and is the heart of her family, which includes her loving parents, Ken and Jenna, and her amazing big brother, Tripp. She is currently in school full-time, where she is absolutely adored by everyone. She receives all therapy services and is currently trialing eye gaze communication devices – she can already recognize her 1’s and 3’s!

Maddie’s favorite activities include car and school bus rides (the bumpier, the better!), jamming out to the Laurie Berkner Band, and soaking up every moment when her friends at school read and interact with her. She lights up when her brother is extra goofy, when he spins her around in her wheelchair, and during snuggles with her family. One of her favorite sounds is the Facebook Messenger ringtone – she knows a video chat with loved ones is about to happen!

Her personality is pure joy – her smile is infectious, and her laugh and babbles are among the sweetest sounds in the world. But don’t be fooled – Maddie knows what she likes and will certainly let you know when she’s not a fan of something!

Medically, Maddie is 100% g-tube fed but remains overall very healthy. She takes medication to manage seizures and reflux, and she also has ASD and mitral valve regurgitation, which may require surgery in the near future. She had cataract removal as an infant and now wears the tiniest contacts to help her see. Maddie is also an active participant in the RCDP Natural History Study and will hopefully soon be part of a clinical trial testing a synthetic plasmalogen (learn more at www.RhizoTrial.org).

Maddie has some unique and hilarious preferences – she loves movies, but most intros? Absolutely not. So far, the Inside Out intro is the only one that doesn’t make her cry. The more action-packed a movie is, the more engaged and giggly she gets! She’s also a trendsetter, inspiring teachers to step up their shoe game with her love of fun, sparkly footwear. In August 2024, Maddie attended her first concert, where she happily snoozed while Poppy screamed on stage and got to watch her brother have the experience of a lifetime – being selected to go on stage with Thirty Seconds to Mars!

As a family, we take life day by day and are dedicated to giving Maddie as many experiences as possible. It is humbling to see the impact she has on everyone she interacts with—teaching her peers, and all of us, how to live with a little more compassion and empathy.