Max Schlee experiences life with a rare inherited genetic disorder, but that does not affect the 8-year-old’s performance in the classroom and athletic field.
“He’s just a normal kid,” his mother, Jamie Schlee, said. “He’s in the gifted and talented program at school. He plays football, wrestling, baseball, and soccer; He’s in all the sports.”
And while Schlee and his twin brother, Cooper, seemed healthy at birth, his newborn screening showed that Schlee had medium-chain acyl-coenzyme A dehydrogenase (MCAD), a deficiency that keeps his body from processing certain fats in food and leads blood sugar levels to drop dangerously low.
About 24 hours later, Shlee was also diagnosed with a cleft palate that made it very difficult for him to feed. But despite these health conditions, the Schlee family was discharged from their local hospital with a feeding schedule.
Schlee, from Farmersburg, Iowa, is this week’s Kid Captain for Iowa football’s Homecoming game against Purdue.
The designation is not only a big deal to Schlee but to his whole family. Jamie said she’s used this opportunity to give back to all the providers and other patients at the hospital.
“I think for us as a family, we’ve thanked our providers, and we’ve just been able to really let everyone know how grateful we are for all the care that he’s received,” she said.
The Schlee family also started a toy drive for the UIHC Child Life team, collecting hundreds of donations.
“A big part of hospital stays for Max was keeping him occupied,” Jamie Schlee said. “It sucks to be in the hospital, so we looked at ways that we could give back because this is an awesome opportunity for Max, but such a cool way for us to help other kids, too. When we delivered all that stuff to the hospital, I think the boys were just as excited about the opportunity to do that as they are for the game.”
While Schlee must make visits to UI Stead Family Children’s Hospital, his mother said she’s fortunate there are no major treatments or necessary hospitalizations for MCAD as long as her son sticks to his diet.
“MCAD is an incurable disorder he’ll have for the rest of his life, and the treatment is eating,” she said. “He has to eat every so many hours, and as he gets older, we get to increase that time. He actually can go about 10 to 12 hours now in between eating, and that’s pretty much the limit for the rest of his life. So we try to stay closer to the 10 just so we have a little bit of a cushion, but that’s the treatment.”
Schlee has been seeing clinical associate professor Amy Calhoun since his first visit to UIHC. Calhoun said Schlee demonstrates courage during his treatment.
“I think Max is doing fantastic,” she said. “Being hospitalized, getting IVs, and getting a lot of labs, which we have to do to check their blood sugar, is really scary for little kids. But I think he does great with that.”
Cooper has been a major support system throughout Schlee’s journey with MCAD.
“Cooper really stays on Max saying things like, ‘Hey, you haven’t eaten today,’ or ‘You need to go have a snack,’ and Max listens sometimes,’” Jamie said. “You can tell when his blood sugar is low because he gets really tearful and upset, and Cooper instantly is like, ‘I think you need some sugar. Let me go get you a snack.’ So his brother really looks out for him.”
The family will be at Kinnick Stadium on Oct. 7, waving to their friends at the hospital, while the crowd listens to Schlee’s chosen song, “Legends are Made,” by Sam Tinnesz.
“That song is just very Max,” his mom said. “It always pumps him up, and it’s a song that he likes to play at home all the time.”