Parent-to-parent: Tips for Home Parenteral Nutrition families

Four-year-old Thomas Onorato is a young zoologist at heart. Often seen with binoculars in hand, the adventurous preschooler is particularly drawn to bird watching. He enjoys talking about his feathery friends and studying their beauty and habitat. Thomas’ love of animals runs so deep that he says he wants to be a veterinarian when he grows up. “Thomas is obsessed with animals. It’s his love,” says his mother, Melissa. Beyond his quest to care for animals, Thomas has two other important missions — to manage the rare condition, microvillus inclusion disease (MVID) and receive the lifesaving parenteral nutrition (PN) support he needs to grow and thrive. Microvillus inclusion disease is a genetic condition of the intestines that causes severe diarrhea and the inability to absorb nutrients. The inability to absorb nutrients is why Thomas receives long-term, home-based PN support. “Thomas will unfortunately be in and out of the hospital for the rest of his life because there is no cure for microvillus inclusion disease,” says Melissa, who travels from Long Island, New York to Boston Children’s for Thomas’ care. “PN is one of the major reasons our precious son is alive today.” Thomas currently receives Omegaven, a fish oil-based experimental drug developed by Boston Children’s Dr. Mark Puder, and medical support from the HPN team, including Dr. Bram Raphael, director of the Home Parenteral Nutrition Program. Thomas gets the nutrients he nee...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories Parenting Dr. Bram Raphael home parenteral nutrition Microvillus inclusion disease Source Type: news