Angelman Syndrome: Maddie’s Story

Four-year-old Maddie loves cheese and fruit snack gummies, being right in the middle of the action, and playing with her twin sister, Kellie, and older brother, Colin. When she was diagnosed with Angelman syndrome, it changed the course of her family’s life forever, setting them on the path to help launch the Angelman Syndrome Clinic at Children’s Mercy.  

“She is the happiest kid you’ll probably ever meet,” said her dad, Patrick Sargent. “The smiles she exudes is what gives everybody their energy to get through a lot of the hard stuff.” 

“Maddie is nonverbal, but she’s incredibly communicative,” said her mom, Laura Sargent. “Her physical development has been really impacted by where her deletion is. We were told she likely wouldn’t walk. She walked! She’s starting to climb stairs.”   

After her diagnosis at Children’s Mercy in January 2020, Maddie’s family went to Chicago and Boston to seek out Angelman syndrome specialists. Over the years, they’ve developed “an army of caretakers.” Laura, a pediatric nurse practitioner who formerly worked at Children’s Mercy, has been instrumental in seeking out the best treatment for Maddie and navigating the insurance labyrinth.  

“Maddie was hospitalized at Children’s Mercy in July of 2021,” Laura said. “While we had these wonderful specialists in Denver and Boston that could be a phone call away, they weren’t in the hospital. When Maddie needs emergent care, I can’t pick her up and take her to Boston. I can’t take her to Denver. I needed somebody at Children’s Mercy.” 

The Sargents began meeting other Angelman families in the area and found many didn’t have the resources to travel to specialists or were struggling with the insurance process. “In some cases, their kids just weren’t getting care, and that’s heartbreaking,” said Patrick.  

The Sargents wanted more for Maddie, and they wanted more for her peers in the area. So they decided to do something about it: explore starting an Angelman Syndrome Clinic at Children’s Mercy. 

The Sargents started a nonprofit, Maddie’s Mission, and held a block-party fundraiser. They met with Diane and Terry Gallagher, whose daughter, Elizabeth, also had Angelman syndrome, to discuss their shared passion for supporting care and research. They talked to their contacts at the Angelman Syndrome Foundation.  

Gifts from the Sargents, Maddie’s Mission, the Gallaghers, and the Angelman Syndrome Foundation created funds, including one that is endowed, to support a new Angelman Syndrome Clinic and Angelman syndrome research efforts. (If Angelman syndrome is cured in the future, the funds will shift to support other neurology and rare disease needs.)  

 “Access to research is a game-changer not just for us, but for families in Omaha, Des Moines, Arkansas, all of Kansas, all of Missouri,” said Patrick.  

“I hope that all the kids that have Angelman syndrome in the region have access to the same level of care that Maddie has,” said Laura. “We would love everyone to have equal access.”