When 3-year-old Kahmari – battling a collection of serious gastrointestinal conditions – came home from a Washington, D.C., hospital, parents Alyssa and Jamie Riedl were told to prepare for his death.
Ten years later, with the support and care of an expert team at UVA Children’s, Kahmari is a 13-year-old who loves singing in his school’s choir, visiting water parks and solving puzzles.
Over the next year, Kahmari will share his story – and the importance of children’s hospitals such as UVA Children’s – across North America as one of 10 Children’s Miracle Network Hospitals National Champions for 2023.
The national champions help raise money and awareness for the 170 Children’s Miracle Network hospitals across the United States and Canada. UVA Children’s has been a Children’s Miracle Network Hospital since 1988, raising more than $14 million for pediatric patients and their families through national and community partnerships.
“Over the years, UVA and Kahmari’s GI team have saved his life more times than we can count,” said Alyssa Riedl, who lives with her family in Culpeper County. “Without UVA Children’s, we would not have our beautiful and thriving 13-year-old boy today.
“Being a UVA and Children’s Miracle Network family is our heart and soul for us,” she said. “It’s helping bring more awareness to kids with rare conditions, helping them to thrive in the very communities they are growing up in, with doctors and nurses that they can build relationships with well into adulthood.”
Kahmari was born with gastroschisis, a hole in the abdominal wall that allows a baby’s intestines to spill outside the body. Addressing that condition led to short bowel syndrome, which can cause malnutrition and weight loss. In addition, Kahmari has chronic ulcers and slow gastrointestinal bleeds that the UVA Children’s pediatric gastroenterology team cares for with monthly infusions of intravenous medications, along with iron or blood transfusions as needed.
“It has been an incredible honor to be a part of Kahmari’s life and help him through this really tough medical condition,” said Dr. Jeremy Middleton, a UVA Children’s pediatric gastroenterologist who leads Kahmari’s treatment team. “With everyone from dieticians, nurses, teachers, social workers, doctors and child-life specialists, taking care of children with short bowel syndrome is a team sport and Kahmari and his family definitely deserve the MVP award.”
The Riedls moved Kahmari’s care to UVA Children’s when he was 3, and during the more than nine years he has received care at UVA, his UVA Children’s team members have become like family to him – or, as he calls them, “my people.”
“Dr. Middleton and my GI team are like my second family,” Kahmari said. “They keep my guts going, keeping me out of the hospital, and have helped to give me a great life with my family. Without my GI team, I wouldn’t be here today.”
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December 23, 2024
