Scott and Sabrina Chosed remember the day four years ago at the Naomi Berrie Diabetes Center when Mary Pat Gallagher, MD, their son’s pediatric endocrinologist, looked at them and said: “He is going to live a completely normal life.”
“We really didn’t know that at the time,” recalled Sabrina, the Manhattan mother of three young boys. “It was exactly what we needed to hear, and it changed everything for us.”
Today, Maxwell Chosed, age 7, is excelling at life with type 1 diabetes (T1D). This is the result of many factors including the 24/7 devotion of his family, his team of expert caregivers at the Berrie Center, the steadiness of an insulin pump and his own determination and cheerful disposition. “He is a sweet, loving and wonderful child,” said Sabrina about Maxwell. “Because he is the way he is, it’s easier to manage his diabetes.”
Maxwell is a positive participator in his own diabetes care. He knows everything he needs to know about diabetes, insulin, counting carbs and is proficient at using his pump and other diabetes devices. On top of this he is curious about all that life has to offer. His dad, Scott, describes young Maxwell as a “serial creator.” He loves music (he plays jazz piano with his brothers in a family band) dance (hip-hop, especially) and any and all art, including storytelling and costume making. He swims competitively (“He is always in the lead in his lane,” says Scott) and has an impressive golf swing.
Maxwell’s tight control of his T1D has resulted in A1C levels—a test known as A1C measures a person’s average blood glucose levels over the past three months—that are nearly perfect. Of course, behind every child with terrific A1Cs are often committed, loving and tireless parents like Scott and Sabrina whose youngest son, Brandon, 4, was born two days before Maxwell was diagnosed with diabetes. It was the same day that the eldest, Zachary, now 9, graduated from preschool. All kids require a lot of attention, often at the same time, something the Choseds are well aware of—but nothing like the detailed attention and hard work it takes to care for a child with T1D.
“Sabrina and I spent an entire year sitting in the lobby while Maxwell attended nursery school,” said Scott. “The pre-school refused to keep track of his food intake or help him if he needed it,” added Sabrina, summing up the problem that young children with T1D and their parents still encounter in pre-schools, schools, after-school programs, and summer camps, even in cities like New York.
Meanwhile, Maxwell, both poised and confident (he once shared the stage with Nick Jonas at a fundraiser for diabetes) makes it all seem so easy, and that’s because from his point of view, it actually is. “Having diabetes isn’t really that hard,” offered Maxwell, who was interviewed (quite happily) for this story. “I’m not sure why people think it is. Everyday you have tiny shots that don’t hurt at all, and you can have a bunch of candy when you become low and need to raise your blood sugar.” Sometimes he dreams of a better continuous glucose monitor (CGM) that would allow him to easily turn over in his sleep without waking up. “Maybe something that uses a headphone or an earpiece,” suggested Maxwell, who may very well grow up and invent one.
“Maxwell’s life is indicative of what people with T1D can now achieve through innovative care technologies that have drastically improved, even in the past decade,” says Dr. Gallagher. “My role is two fold; to ensure that Maxwell and his family are well cared for today, while collaborating with the Berrie Center’s scientists to help find a cure for tomorrow.” Scott agreed, “the Naomi Berrie Diabetes Center is an amazing place especially for children. The totality of the place is top notch. It’s like a fine hotel that reveals itself each time you go”.
This fall Maxwell will be a second grader at the Speyer Legacy School in Manhattan where his older brother Zachary also attends. There is another child at school with T1D in his class and a school nurse on campus who takes care of them when needed.
Scott and Sabrina recently became Outreach Committee Co-Chairs of the Berrie Center’s Leadership Council. In this role, the Choseds will help to build a strong community of patients and families who share a common experience of managing diabetes while supporting the Berrie Center’s dual mission of diabetes research and care.
To learn more about the Leadership Council, contact the Berrie Center at 917-484-0090 or email firstname.lastname@example.org.