Turning Mealtime Into Moments of Hope 

Many kids are picky eaters who refuse foods they dislike. But for Jax, the refusal to eat went far deeper.  

“There was actually a fear of food,” says his mom, Amber. “He wasn’t avoiding the food because he just didn’t want to eat. It was because he was scared of what was going to happen to him.”   

Jax, now 11, faced feeding challenges from the start. When he was 8 days old, he was diagnosed with failure to thrive. His parents brought him to Phoenix Children’s in search of answers, beginning a years-long journey of appointments, tests, procedures and therapies.   

At 18 months, Jax had a feeding tube placed. At 3, he went through Phoenix Children’s intensive feeding program for the first time, but the struggles continued. Six years later, he went through it again. 

“It just felt like we were running into a brick wall. You could tell the fear of food was real, and he was fighting us more and more each day,” Amber says.  

A pivotal moment

At age 10, Jax went through the intensive feeding program for a third time. 

“At the time, I had this tunnel vision about getting his feeding tube out,” Amber says. “His feeding therapist asked me, ‘Mom, what’s really your goal?’ What I realized I really wanted was just to be a mom and son at lunch.” 

That exchange with Jax’s feeding therapist proved to be the key that unlocked everything.  

“I learned how to reach him, and I learned how to get him the extra support he needed and how to be his mom better at the table and away from the table,” says Amber. “Jax is eating more than he has ever eaten in 11 years. He is by far the healthiest, strongest, best version of himself right now.” 

Building a foundation 

Throughout Jax’s journey, he and his family have relied on donor-funded programs like Spiritual Care and Child Life to ease the way. At the hospital, they prepare for Jax’s appointments by visiting the chapel to center themselves. After appointments, Jax is rewarded with a trip to The Child Life Zone or the playground—both funded by community support—where he can just be a kid, free from procedures and tests and treatments.   

All of this has made the hospital a special place for Jax and his whole family. “Jax is confident, he feels loved, and he knows he’s being taken care of,” Amber says.     

As Jax approaches his teenage years, Amber is confident that, with the support of his care team at Phoenix Children’s, their family is building a foundation that will allow Jax to have the life he wants.     

“It's scary, but it's less scary now because I know I have a strong team to support Jax with all the challenges we have,” she says. “I know that if I'm panicking that something seems wrong, I can go to them and they're going to fight to get an answer.”