Eleanor, Age 7

Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She has had severe GERD and food allergies from birth. She continues to have Failure to Thrive and is the size of a 5 year old. Emotional maturity of a 5 year old. Her special needs are all encompassing and require considerable time and mental energy. So when our formula stores get low, the time investment to call pharmacy, doctors office, and then wait for a new TAR and then wait for shipment are extremely stressful. I have had to purchase formula many times as a stopgap measure, which takes hundreds of dollars away from therapy budgets ==to meet basic nutritional needs. This sets us back from food exploration and worsens her aversions. It takes months to get back on track. She needs formula to survive. This is not a preference. This is hard work to get safe foods into her mouth. Formula keeps her alive and barely growing. Here is a sample of my daughter’s daily food intake: 5 oz formula 6 am, water 8 am, sits w me while I eat 9 am while sucking ice, 5 oz formula 10 am, diced bell pepper 3 small diced and 2 pieces thinly sliced celery 11 am, 1130 am 1 TBSP sweet beans with potato chips, ice at 1, 5 oz formula at 2, 5 chocolate chips at 3, 2 small pieces of cauliflower pizza crust at 4, ice at 430, 5 oz formula at 5, 5 oz formula at 730. Without her formula she has severe mood swings and cannot function, let alone grow.

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