Friends of Feeding Matters,
As the new chief executive officer of Feeding Matters, I am honored, proud, and eager to step into this role and serve our professionals and families with passion and integrity.
With a few years shy of a decade with the organization, I have worked closely with our Founder and Emeritus Board Member, Shannon Goldwater, and former CEO, Chris Linn, two women I deeply admire. Both courageous women have helped me grow as a professional and have made me realize my life’s work is with Feeding Matters. I am grateful for their continued support of me and the organization they built.
During my tenure with Feeding Matters, I have held several positions that have enabled me to better understand how truly impactful our mission is and equipped me with the skills and knowledge to further transform Feeding Matters. And with that, I wanted to share a bit about myself.
My career mission statement is to lead with empathy, integrity, and service to influence systems and impact vulnerable and underserved populations. I could not think of a better way to do that than committing myself to advocating for children with pediatric feeding disorder (PFD). In 2013, I fell in love with the mission of Feeding Matters and am excited to see our vision of creating a world in which children with pediatric feeding disorder thrive, realized. I used to think that “changing the world” happened by impacting one person at a time. That is still certainly a true and noble cause, but I realized early in my career that I am good at thinking about and creating systems and that I could use that strength to impact millions of children through policy changes and partnerships. Feeding Matters does just that. We look at what is needed from an Education, Advocacy, Research, and Support perspective to ensure that all children who have PFD are identified and treated early and their families are supported and respected.
At Feeding Matters, we have the team motto of striving for “anything but ordinary,” a credo that guides us when we support our families going through such emotional experiences and helps us to celebrate milestones with them along the way. That motto is our north star as we focus on providing the latest evidence-based information and building community through our international conference. It is the reason we aggressively execute our advocacy agenda to ensure we advance the field of pediatric feeding disorder so all children with PFD thrive.
With all the uncertainty right now, Feeding Matters has remained a stable, certain place for families to find support and professionals to find community. We are used to adapting, being nimble, and most of all, staying committed to our work.
Thank you for your partnership and support over the years. We are excited about this next phase of our organization. With your support, we will succeed in creating a world where all children with PFD thrive.
Jaclyn Pederson, MHI
Chief Executive Officer
More than a symptom, pediatric feeding disorder is its own diagnosis.
Recently, Feeding Matters received word that the U.S. Centers for Disease Control and Prevention (CDC) has officially approved Pediatric Feeding Disorder to be a stand-alone diagnostic code (R code) in the next edition of the International Classification of Disease (ICD) on October 1, 2021!
“This means that in just 5 short years of collaborating with families and healthcare professionals, Feeding Matters was the catalyst to the stand-alone name, definition, and diagnosis of PFD – a condition so many before us have merely dismissed as a symptom of a different problem.” Shannon Goldwater, Feeding Matters Founder + Emeritus Board Member
This code, combined with the PFD consensus paper, creates a stand-alone diagnosis for PFD marking a milestone that Feeding Matters has achieved one of our main advocacy agenda items. This is the foundation for all of the work we need to do to create a system of care for children with PFD. Creating a stand-alone diagnosis for PFD means validation for families who feel lost and do not know why their child is struggling to eat, and credibility to healthcare professionals who have long been part of a forgotten industry.
We will share more information as it emerges in the months ahead. We ask you to share your questions regarding PFD as a diagnosis so that we can prepare accurate answers. Currently, we are partnering with organizations, governmental agencies, and insurance companies to provide education and support regarding this new diagnosis. By working closely with healthcare professionals and insurance companies, we will develop strategies to promote appropriate use of diagnostic and treatment codes and prevent over-utilization and over-spending while still allowing for accuracy in diagnosing PFD. Recognition of pediatric feeding disorder and judicial reimbursement practices are instrumental in improving health outcomes.
Together, we have taken a step closer to realizing our vision of creating a world where children with pediatric feeding disorder thrive. Now that we have achieved a stand-alone diagnosis for PFD, the work continues on the rest of our advocacy agenda: early identification screening at well-child visits, best practices for care, PFD qualifying for early intervention, inclusive insurance coverage, federal funding for PFD research, and accredited PFD specialists.
We are grateful to you our community of families, healthcare professionals, and community members who are passionate about partnering with us to put PFD on the map. Additional special thanks go out to the Dorrance Family Foundation – our Visionary Power of a Name donor, Shannon Goldwater, Chris Linn, the PFD Alliance, the Family Advisory Council, the Vitalyst Health Foundation, ASHA, AOTA, NASPGHAN, ASPEN, the National Coalition for Infant Health, and the American Academy of Pediatrics for working with Dr. Praveen Goday and our Medical Director, Dr. Jaime Phalen to present the proposal to the CDC.
This is just the beginning. We need your support and partnership to ensure that this success continues. If you have ideas or connections in getting the word out and working together on our advocacy agenda, please reach out to us: email@example.com.
Many things stand out to me after getting to know the Perry family.
For one, the true gratitude they feel raising their three children, two of whom have pediatric feeding disorder. Also, and perhaps more significantly, it’s how this couple masters the ability to not only bear the weight of some realities—be they difficult, terrifying, or complex—but to do so with a nimble grace that humbles me.
Whether you are a family struggling with pediatric feeding disorder or one that encounters other challenges thrown your way in this post-COVID world, the resilience that the Perry family brings to life can offer inspiration to us all.
Two parents, one partnership
As Vice President of International Distribution for a medical company, Brandt juggles a Tetris-style schedule of business obligations, work travel, and family needs. Yet, despite his hectic days, as soon as I talk to him I understand immediately that this is a person who never misses a chance to honor his commitments or extend kindness. Affable and genuine, Brandt’s natural leadership must have started in kindergarten.
As the saying goes, “like attracts like” and this is evident when I speak to Brandt’s wife and partner in all things, Krya.
Because she has two children with PFD, Krya’s world revolves around their health and wellness—not simply out of necessity, although that is certainly true. No, this is a woman who is dedicated to the living messages, her children, that she will send into the future and who has the strength to show up for that daily task with a fire few could embody without burning out.
Here is a woman who has constructed unique sleeping arrangements to stay up nights on watch, who is on a first name basis with specialists at Phoenix Children’s Hospital, and who teaches anatomy and physiology as an adjunct faculty member at Mesa Community College in her “spare time.”
Krya, when faced daily with challenges and problems, approaches each one with a joyful flexibility.
Brandt and Krya met as undergrads at Northern Arizona University in 1996 where Brandt was studying accounting and Krya was studying biology. Brandt went on to receive his undergrad from ASU and his MBA from UA and Krya her grad degree from ASU in Molecular biology. They dated for several years and married in 2002. They were married for 10 adventurous years of scuba diving, rock climbing, and backcountry skiing before beginning their family.
After I speak to Krya and Brandt on the phone, I wonder aloud if they are just the type of polite people who don’t complain over the telephone. Surely, when I meet them in person there will be at least one or two low grumbles about the medical complexities woven into their lives because of raising kids with pediatric feeding disorder. So when they invited me to their house this past March, I eagerly accepted. I wanted to meet these two.
A home like any other… almost
As I step through the front door, I see so many things that feel familiar to me as a mother. ALL! THE! LEGOS! Makeshift art stations in rooms. Preschool crafts tacked on the fridge. Multi-bin toy organizers that would put any daycare center to shame.
I also see a kitchen counter stacked with medical supplies. A bedside table with an enteral feeding pump affixed to an IV stand for night feeds, specialty tapes to hold tubes in place and topical creams for eczema issues that arise in the middle of the night. Emergency “go bags” packed and waiting by the door.
Looking around the Perry household, I am reminded that in addition to any extracurriculars like music, dance or karate class Brandt and Krya must also fit feeding therapy sessions and allergy shot appointments into an already packed schedule. These are parents who have learned to speak to doctors as if they attended med school. They are a couple for whom hiring a babysitter so they can enjoy date night is not a reality.
While the worries of parenthood are different for every household, for Brandt and Krya, they are especially distinctive. They care for children whose oral intake relates not to age but to medical and nutritional complexity, whose school attendance relies on hours of augmented parental feeding support, and who encounter risks associated with feeding tube placement, cleaning, and function.
But let it be known—these kids are anything but the sum of their health issues. They are amazing.
Meet the Perry children
Brandt and Krya’s first child, Austin, was born February 17, 2012. Now eight years old, Austin is the problem-solver. He’s analytical, process-driven, and the empath of the family. His parents describe him as the mighty big-brother protector of his two younger siblings.
Middle child Brayden was born on January 28, 2014. He’s independent, strong-willed, and poised and equipped for his health battle. Which is this: At 18 months, Brayden was diagnosed with a disease called eosinophilic esophagitis (EoE). He was losing weight and experiencing severe eczema, frequent vomiting, horrible fits of stomach pain, asthma, and allergic reactions (including anaphylactic reactions) to foods.
Physicians at Phoenix Children’s Hospital diagnosed him, through surgical procedures and biopsies, with EoE. They determined that a gastrostomy tube (G-tube), a tube inserted through the abdomen that delivers nutrition directly to the stomach, had to be surgically added for his survival. He was given a diet of only elemental formulas through his G-tube. Brayden’s biopsies always show eosinophils, even with treatment (Budesonide) and a 100% elemental diet. At age six, Brayden is currently 100% tube fed.
EoE is like asthma of the airway. Unfortunately, proteins in many different foods can cause swelling within the esophagus. This makes eating for someone like Brayden, who is on the most severe end of the disease, a complete nightmare. Therefore, he only “eats” an elemental diet (a special amino-acid based formula) through his G-tube.
Brandt and Krya’s third child was born on August 15, 2016—a daughter named Sydney. Three-year-old Miss Sydney is the beautiful belle of the ball, a mini-mom happy to give orders to her big brothers but also a relaxed, easygoing kid.
Sydney was diagnosed with chronic FPIES (Food Protein-Induced Enterocolitis Syndrome) when she was 18-months old, and she now receives 50% of her daily calories from a G-tube.
When faced with daunting health circumstances for two of your three children, where do you turn? For Brandt and Krya, it was Feeding Matters.
Support, community and help
Because elemental formula—the food that Brayden relies on to survive—is a highly specialized medical item, getting it and affording it is an ongoing struggle with insurance.
Brandt and Krya spend hours, usually at the end of a long day at their respective jobs, on the phone with insurance companies. They tirelessly research and follow up on coverage conditions, look into state law mandates, and deal with the appeals processes and meticulous deductible tracking. It’s a big endeavor, for sure. And when things get overwhelming, there’s a support team ready to help.
Enter Feeding Matters.
When Brayden was two, the Perry family found Feeding Matters after being referred by a friend. The organization introduced them to a feeding program at Phoenix Children’s Hospital and offered helpful specialist provider directories, including feeding therapists, OT sensory-related therapists, and nutritionists.
After Sydney’s diagnosis, Brandt and Krya became further involved with Feeding Matters. Thanks to the organization, Brandt and Krya knew which support teams to assemble for Sydney, and they felt excited at the prospect to give back to the Feeding Matters community. Brandt and Krya—ever the leaders are always ready to share their strength and resilience. They regularly participate in Feeding Matters’ annual luncheon and conference events. Brandt is the new FAC chair serving on the PFD Alliance Leadership and bringing the family voice to the Board of Directors.
Brandt says the resources they found through Feeding Matters show him and Krya that they are not alone when it comes to navigating these waters—insurance battles, access to information, connecting with the right experts—and Krya adds that the sense of community they experience with other families living through similar realities is invaluable.
The road ahead
Having a child with pediatric feeding disorder changes a family’s life profoundly. So, while the Perry family’s medical journey continues, I know that Brandt and Krya are no strangers to the now popularized COVID-19 term “the new normal.” This couple long ago perfected the art of staying fluid and being flexible.
While this might not be the exact road a parent expects, it is a life that Brandt and Krya embrace with gratitude, patience, and joy.
As I conclude my most recent visit with Brandt and Kyra over the phone, I’m thinking of their strength and resilience in the midst of ever-changing realities. It’s impossible not to be moved by their ability to take each day in stride and show up for their children and each other—something 2020 demands of all of us. It’s a lesson I’ll keep with me.
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.