Penelope “Penny”, Age 6

Location: Arizona, United States

Challenges:Penny was born 3 months early at 28 weeks weighing only 1lb 14oz She spend 3.5 months in the Banner Desert NICU and always struggled with feeding. Penny came home on the NG tube and about 6 months later she got a G-tube. She suffered from reflux but no other diagnosis was given (this was before PFD became an official recognized diagnosis). She was constantly throwing up and even with continual feeding therapy her feeding journey was long and stressful . Finally after many years of therapy, tests, swallow studies, doctor appointments, and patience, she was eating enough calories to maintain her weight and at 3.5 years we were able to take her G-tube out. She is still small but quite mighty and nothing is holding that girl back!

Formal PFD Diagnosis: No

Type of Insurance: Blue Cross Blue Shield of Arizona

Percent of monthly budget that goes to feeding difficulties: Nothing now, but while we were struggling with her feeding journey it was quite significant with therapy, dietitians, doctor appointments, and special tools, specialty food and formula

Does insurance cover any / all medical costs? Some


During Penny's feeding journey, having a formal diagnosis of PFD/Pediatric Feeding Disorder would have been so helpful with dealing with doctors and insurance. Instead of giving a big long drawn out explanation as to why she wouldn't eat and what we were dealing with, I could have just responded with she has PFD and that would have been more understood by all and saved frustrations. Also at one point we had a hard time getting our insurance to approve her G-Tube supplies. I truly believe having that diagnosis would have made that process much smoother.

What having coverage could mean

Having coverage for therapy, dietitians, doctor appointments, specialty food, formula and tools would have been amazing. Not only would our financial situation been better off but the stress, and headache of it all would have been gone - and that would be worth more than anything, especially when dealing with a child who wouldn't eat.,