The Power of a Name

Published by Feeding Matters on Jul 22, 2019

This article is reposted with permission from Phoenix Business Journal.

A smooth, perfectly plump firm apple sits in front of you. The skin is unblemished and the interior is firm and sweet. The seemingly simple task of opening your mouth to take a bite, in actuality, is quite complex. Feeding is the single most complex and physically demanding task an infant will complete for the first few weeks, and even months, of life – requiring the use of 26 muscles and 6 cranial nerves working in perfect harmony to move food and liquid through the body. When one or more pieces of this feeding puzzle are missing, out of order, or unclear, infants and children can have difficulty eating and drinking. That gorgeous apple will remain uneaten.

Although more than 2.3 million children under the age of 5 experience severe pediatric feeding disorder in the United States annually, including 51,000 children in Arizona, PFD often goes undiagnosed and underserved. Like Apollo.

Apollo struggled to feed from birth. His family took him to the doctor again and again, collecting diagnoses including severe reflux, milk allergies, and failure to thrive. He underwent tests for celiac disease and cystic fibrosis. Both came back negative. At 10 months old, he was hospitalized with RSV and pneumonia. He had his adenoids removed. But none of that explained his feeding struggles. By his first birthday, Apollo was skinny, fussy, and still dropping off the growth curve.

For more than 22 months, little Apollo struggled to eat or drink. His mother counted two or three bites as a “good meal”. His doctors were puzzled by his mysterious symptoms. Before Apollo’s family could find the answers they needed, there would be three surgeries, the insertion of a feeding tube, and more than 5 years of feeding treatments.

Fortunately for children like Apollo, the paradigm is shifting. Through the power of a name – pediatric feeding disorder, as published in the Journal of Pediatric Gastroenterology and Nutrition – families navigating the diverse and broad spectrum of pediatric feeding struggles will find the care, support, and resources they need.

But, there’s more work to do. In 2018, Feeding Matters launched a $3 million, 3-year campaign to maximize the efforts needed to launch pediatric feeding disorder, including a $1 million gift from the Dorrance Family Foundation. With your donation, we will accelerate identification, ignite research, and prompt collaborative care for children and families.

That’s the power of a name.

Power of a Name

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$1.79 million of $3 million raised