Diego, Age 9

Diego is a happy and thriving 9-year-old boy from Chicago, IL with a history of intestinal atresia. This means that part of his intestine did not develop before he was born. He was on total parenteral nutrition (TPN), nutrition through his vein, for a few years. He was then transitioned to just nutrition through a feeding tube in his stomach when he was 3 years old. Once he started receiving all of his nutrition through a feeding tube, his central line was removed, thus eliminating the risks of life threatening blood infections. When he was receiving state medical insurance, his formula was covered. However, his father got a new job and was then able to place the family on his private insurance through his employer, but the new insurance carrier will not cover his medical food. The cost of the food is approximately $1,000 dollars each month. This has a significant impact on his family. Diego was tried on a home-made blenderized diet, but he was unable to gain weight for more than one year. Now his mother has been paying for some of the formula to help with his growth. His mother was recently able to receive a $4,000 grant to help pay for his medical food. This is a temporary solution that will soon runout.

Unlike adults, children are constantly growing and developing, especially their brains. If children are unable to receive the right amount of nutrients, their growth can be delayed and they may not be able to learn as well as their other counterparts.

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The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.