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May is PFD Awareness Month

Published by Jaclyn Pederson, Feeding Matters CEO on May 04, 2021

Dear Friends of Feeding Matters,

We live and breathe by the stories of our PFD community. The stories of triumph, of progress at any cost, and even the stories of lost weight or a progress plateau.

Unfortunately though, sometimes the story is that a family has found us when they have already been struggling for quite some time. While it is not too late at any point in a family’s journey to find Feeding Matters’ support, we do hope that families can find us at the start of their journey and are actively working in many ways to ensure this is the case for families.

The first couple years of our journey with PFD brought many challenges and questions that seemed to isolate us.  Finding Feeding Matters brought us much-needed resources and comfort – we were no longer alone navigating PFD.  Now I volunteer with Feeding Matters to bring their support to others struggling with PFD;  hopefully easing journeys and perhaps improving outcomes. -Brandt Perry, Family Advisory Council Chair

PFD Awareness is key to supporting families, educating professionals, and changing the system of care. Due to this, we have decided to move PFD Awareness Month to May to bring even more recognition and impact to this issue for years to come. Therefore, this May we encourage you to follow us on social, share your own stories, and empower others to learn more about this condition that affects more than 1 in 37 children under the age of 5 in the United States each year.

This May and even June, we commend our PFD community, honor our partners, and celebrate the caregivers. So, this Mother’s and Father’s Day, we celebrate all caregivers, whoever you are. We see you – your strength, your courage, your love. We are amazed by you.

Best wishes,

Jaclyn Pederson, MHI
CEO

The Registered Dietitian as a PFD Resource

Published by Alayne Gatto MS MBA RD CSP LD CLC FAND, Medical Science Liaison, RB Mead Johnson Nutrition on Apr 01, 2021

“Is my child just being picky?” This is a question that parents and caregivers may often ask themselves when mealtimes become a struggle. And indeed, there are times when an infant or child just finished a growth spurt and seems to be eating less. Or when a toddler refuses most foods except ones of a certain color or texture, which is called a “food jag”. A food jag is often a normal part of childhood development. But when does it become “not normal”?

A Pediatric feeding disorder (PFD) is defined as impaired oral intake that is not age appropriate, lasts at least 2 weeks, and is associated with medical, nutritional, feeding skill, and/or social-emotional challenges.1

There is often an underlying reason for the pediatric feeding disorder that needs to be uncovered. A registered dietitian who specializes in pediatrics is a qualified heath care provider to work with you and your child. They are a credentialed specialist who can assess your child’s growth and nutrition needs. A nutritional assessment may include several components:

  • Medical history
  • Diet history
  • Medical tests or procedures
  • Laboratory values
  • Anthropometric measurements (weight, length, head circumference)
  • Physical examination

A registered dietitian may also complete a behavioral and feeding disorders assessment that identifies:

  • Limited food variety acceptance (color, texture, smell)
  • Limited tolerance to enteral nutrition (vomiting, diarrhea, constipation)
  • Aversion to foods/beverages
  • Mechanical issues (gagging, choking, aspiration)
  • Neurological (failed swallow study)
  • Inadequate enteral intake (food refusal at meals, prolonged feeding times, muscle wasting)

A complete assessment is more critical in a pediatric patient versus an adult patient because children can become malnourished quicker than adults. Children have lower body fat, lower muscle mass, but high calorie requirements. Risk for inadequate nutrition increases when a child is not consuming sufficient key nutrients like protein, fat, iron, calcium, and Vitamin D. This is important because children, especially in the first 1000 days of life, are undergoing a period of rapid brain growth which is the foundation for optimal development, a key factor in long-term health.2

Registered Dietitians are a specialist that your doctor and/or insurance provider can refer you to. Registered dietitians may work in private practice, in hospitals and in specialized feeding team clinics. They may also be employed by companies that manufacture formula and food supplements. Early Intervention, Head Start, and the WIC program are government entities that may have registered dietitians as part of their staff. They are a valuable resource to support you and your family!

References
1. Goday PS, Huh SY, Silverman A, Lukens CT, Dodrill P, Cohen SS, Delaney AL, Feuling MB, Noel RJ, Gisel E, Kenzer A, Kessler DB, Kraus de Camargo O, Browne J, Phalen JA. Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework. J Pediatr Gastroenterol Nutr. 2019 Jan;68(1):124-129. doi: 10.1097/MPG.0000000000002188. PMID: 30358739; PMCID: PMC6314510.

2. Schwarzenberg SJ, Georgieff MK; COMMITTEE ON NUTRITION. Advocacy for Improving Nutrition in the First 1000 Days to Support Childhood Development and Adult Health. Pediatrics. 2018 Feb;141(2):e20173716. doi: 10.1542/peds.2017-3716. Epub 2018 Jan 22. PMID: 29358479.

Volunteer Spotlight: Alexandra Marcy

Published by Feeding Matters on May 01, 2021

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Alexandra Marcy.

Tell us a little bit about yourself and what you do.
I am a full time stay at home mom to 3 amazing kiddos! I have a son who is 13 years old and 2 daughters, one is 9 and the other is 2. My husband and I own a few rental properties that I manage and we also own an auto repair shop that my husband runs. Our life is very busy but I love it!

What motivated you to become involved with Feeding Matters?
My youngest daughter Emerson was diagnosed when she was about 4 months old with PFD and some other congenital disorders. I was introduced to this organization through my feeding therapist. The volunteers have been wonderful and supportive. After my daughter was stable and has been able to maintain that, I decided to offer my support to other mothers who are struggling with this as well.

How have you volunteered with Feeding Matters?
I am currently a family coach.

What has been your favorite part of volunteering with Feeding Matters?
Giving hope to families when they feel there isn’t any.

What sets Feeding Matters apart from other organizations?
The volunteers and coaches all have dealt with some sort of PFD and are sharing their experiences with PFD.

Volunteer Spotlight: Robyn Neiderer

Published by Feeding Matters on Sep 01, 2021

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Robyn Neiderer.

Tell us a little bit about yourself and what you do.
I am a wife to an incredibly supportive husband, Matt, along with being a blessed Mama of four children (Abbie 15 yrs, Danny 13 yrs, Patrick 8 yrs, and Gabrielle 3 yrs). Professionally, I am an Adult Nurse Practitioner that has a wide variety of work experience in surgical trauma, interventional radiology, women’s health and general health wellness. I am a devoted yogi practicing all forms of yoga/meditation daily to maintain balance in our crazy life! Our crew loves to travel to new adventurous destinations with our favorites including any island of the Bahamas or Caribbean!

What motivated you to become involved with Feeding Matters?
My son, Danny, was born with Silent Reflux which turned into Failure-to-Thrive. He associated eating and drinking with pain, which eventually turned into him fully rejecting all forms of food and his weight dropping significantly. We struggled with his eating from birth until he was 3 years old, when his symptoms finally resolved as he outgrew the condition. During that challenging time our family didn’t know of Feeding Matters and felt very alone going through all of his specialist appointments and learning how to teach him to eat. Shortly after life started improving for us, a friend referred me to Feeding Matters and I was so relieved to find this incredible organization! I didn’t want any family to go through what we went through without support. I immediately signed up to become a volunteer as a Family Coach with the Power of Two Program providing assistance to families affected with feeding challenges of all types. I have enjoyed connecting with families over the past 10 years and look forward to continue my work with Feeding Matters!

How have you volunteered with Feeding Matters?
I have worked as a Family Coach with the Power of Two Program consistently for 10 years. I was honored to speak at the 2017 Feeding Matters Conference sharing the family perspective of life with a child having a feeding disorder. It was truly a gift being awarded the 2017 Community Ambassador Award that same year! I worked as a member of the Family Advisory Council collaborating advocacy of family priorities with medical professionals. I also have worked as a Community Ambassador locally within my community promoting the mission of Feeding Matters to different pediatrician private practices and pediatric services. I was blessed with the opportunity to work on a professional level with Feeding Matters as a Parent Support Program Coordinator guiding the work of all of our wonderfully talented volunteers!

What has been your favorite part of volunteering with Feeding Matters?
Connecting with families around the world who have experienced similar feeding challenges that our family went through has been such a rewarding role! You learn that we all may live different lives but our families have many similarities that we sometimes struggle with. My absolute favorite part of volunteer work has been listening to different family journeys and hearing the relief in a parent’s voice when they realize that they are not alone. That form of support that we provide, encouraging families to recognize the strength that they truly have within themselves to advocate for their children is such a gift!

What sets Feeding Matters apart from other organizations?
Feeding Matters is a unique organization in that they have the ability to be a family advocate but also balance the important work of collaborating with medical professionals. It is this delicate relationship with families and medical network in our world that need to work together implementing changes. The next generation of our children and their needs must be made a priority! The journey that Feeding Matters continues daily to promote awareness and advocacy of pediatric feeding disorder will benefit our society as a whole moving forward into the future!

Volunteer Spotlight: Family Guide Volunteers

Published by Feeding Matters on Feb 08, 2021

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you our Family Guide Authors, Reviewers, and Editor.

Family Guide Authors

Deniselynn Henderson

Tell us a little bit about yourself and what you do.
I am a mother of two, Trey (19) and Bailey (21). I love spending time with my kids, traveling, and practicing yoga. My two favorite places to hang out is at Lake Michigan beach (luckily only 25 minutes from my house), and outside with my three Nigerian Dwarf goats (Peppermint Patti, Peanut, and Lucy). I am gluten free so I spent a lot of time cooking and baking with local ingredients or with items from my garden.

I have been a pediatric occupational therapists for over 22 years. I have the best of both worlds as I teach at a university and work part time in a pediatric clinic. I have been able to incorporate my love of animals into my profession working with horses, dogs, and goats which has been rewarding to see the progress of children and families when they are around animals. I enjoy working with graduate students at the university, being part of their studies and seeing how they contribute to the occupational therapy profession.

What motivated you to become involved with Feeding Matters?
I was introduced to Feeding Matters from a colleague and I found an instant connection with their organization. As a mother, I did not have resources to help me manage my own son’s feedings issues 19 years ago even though I had recently graduated from occupational therapy school. Throughout my career, I devoted time finding resources for families so they would not feel the sense of loss I had. I was thrilled to find an organization that embodied the same passion to help families, share stories, while advocating for diagnostic changes in the health care world. I was motivated to be part of a community that could understand my journey as a parent.

How have you volunteered with Feeding Matters?
I have been part of the “Power of Two Family Coach” program since 2019 and had the opportunity to be a contributing author on the Feeding Matters Manual that was re-published in 2020.

What has been your favorite part of volunteering with Feeding Matters?
I love connecting with families and listening to their stories. You hear in their voices and see on their faces the appreciation for Feeding Matters. I enjoy learning from Heidi and other family coaches. Heidi is an amazing person that takes time to check in on you and your child, provides support and encouragement despite the many job responsibilities she carries. I love how positive and productive Feeding Matters is an organization for myself and families.

What sets Feeding Matters apart from other organizations?
Feeding Matters is an organization that listens to families and their stories. It recognizes the struggles and the need for family advocacy and necessary health care education. Feeding Matters values the contributions of parents and professionals and creates a platform for everyone to connect, learn, and support each other. Feeding Matters has developed an effective family coaching program across the world, making ground breaking impact on families and communities.

Kelsey Thompson

Tell us a little bit about yourself and what you do.
I am a speech language pathologist in private practice, and a PhD student at UNC Chapel Hill. In my role as a SLP I specialize in pediatric feeding disorders, but also see kids with a variety of other diagnoses. In my PhD program, I am interested in studying how children learn to eat solid foods and how we can use biobehavioral measure to study this transition in infants at high risk for long-term feeding disorders.

What motivated you to become involved with Feeding Matters?
After being exposed to Feeding Matters, I was compelled by its mission and commitment to integrating providers, families, and researchers, as both a clinician and researcher. Further, walking alongside families of children with PFD as a speech pathologist and seeing their hard work motivated me to give back!

How have you volunteered with Feeding Matters?
My major role thus far has been as a co-author of the Family Guide. I have also helped creating some of the graphics you see on social media and for reports!

What has been your favorite part of volunteering with Feeding Matters?
My favorite part of volunteering with Feeding Matters has been the people! It has been a joy to work with people from a variety of different backgrounds – researchers, parents, therapists – to advance this important work.

What sets Feeding Matters apart from other organizations?
Feeding Matters is unique in that it truly integrates all of the stakeholders involved in pediatric feeding disorders, including families, clinicians, and researchers. This is critical for advancing advocacy, education, support, and research.

Family Guide Authors

Tessa Gonzalez

Tell us a little bit about yourself and what you do.
I’m mom to two little ones including a 4 and a half year old with pediatric feeding disorder who has a CASK gene mutation.

What motivated you to become involved with Feeding Matters?
I’ve seen first-hand how helpful it can be to have personalized support from other people who know what it’s like to be in your shoes. I wanted to be able to use my experiences to help other families.

How have you volunteered with Feeding Matters?
I have mentored a couple of families through the Power of Two program and provided feedback for the family guide which I loved being able to be a part of.

What has been your favorite part of volunteering with Feeding Matters?
I love talking with other families and brainstorming ways to help them best advocate for their kids. It’s really easy to doubt yourself when dealing with a poorly understood condition like PFD. Sometimes all you need is for someone else to remind you that you know your child best and that it’s ok to be an advocate.

What sets Feeding Matters apart from other organizations?
The huge variety of efforts that Feeding Matters has taken on. I think Feeding Matters has seen and addressed so many needs which is unusual compared to other organizations I’ve seen.

Ronald Serbin

Tell us a little bit about yourself and what you do.
I am a general pediatrician in Phoenix, with an interest in caring for children with special needs, complex medical problems, and pediatric feeding disorders.

What motivated you to become involved with Feeding Matters?
I met two of the founders Chris Linn and Shannon Goldwater at their booth during a pediatric conference around the beginning of Feeding Matters, when it is was called P.O.P.S.I.C.L.E. I recognize the number of children that I had seen with feeding difficulties and the lack of training I had in treating children with feeding disorders during my training. I felt that I could give their organization my perspective as a pediatrician who cares for children with feeding difficulties.

How have you volunteered with Feeding Matters?
I began on their Medical Advisory Council, participated in multiple Feeding Matters Conferences consortiums, including speaking at the conference and the annual fundraising lunch, participated at the start of the development of the Infant and Child Feeding Questionnaire and development of the Pediatric Feeding Disorder as an entity.

What has been your favorite part of volunteering with Feeding Matters?
To be able to contribute, albeit a small part, in the growth, influence, and importance of Feeding Matters in their development as a small local organization to an international organization which helps children and families all over the world in their mission to overcome a Pediatric Feeding Disorder.

What sets Feeding Matters apart from other organizations?
Feeding Matters has a mission to advocate for children, their families and providers in all disciplines with a pediatric feeding disorder. Feeding Matters accomplishes these goals by coordinating resources from the expertise in disciplines from all over the world to develop awareness, education, public policy, research, earlier and improved identification, and improving outcomes of children with pediatric feeding disorders. These objectives have been accomplished and new ideas are developed because of the vision and perseverance of the Feeding Matters leadership, staff, and support from their partners around the world.

Family Guide Editor

Loran Edwards

Tell us a little bit about yourself and what you do.
I am an occupational therapy student at the University of Puget Sound in Washington state and I am the mother of a 10 year old with a PFD.

What motivated you to become involved with Feeding Matters?
When my daughter was born premature and needed a feeding tube to eat, I felt very alone and scared. Through the internet, I found other families who knew what I was going through and helped me through the darkest times. A few years later, I found Feeding Matters and knew it was time for me to give back and start helping others as I had been helped.

How have you volunteered with Feeding Matters?
I have been a family coach for about 6 years. I have also worked on several editing projects for Feeding Matters, the latest one being the Family Guide. I am so excited about it and thing it is a great resource for families!

What has been your favorite part of volunteering with Feeding Matters?
I have loved connecting with other families and learning from them. It is a wonderful community helping each other to navigate the confusing, often scary, world of PFD.

What sets Feeding Matters apart from other organizations?
I don’t know that other organizations don’t do this, because I am not involved in other organizations, but everyone at Feeding Matters is very easy to reach out to and talk to and they really care about the families they are serving. And EVERYONE understands the challenges that come with PFD! It is wonderful to talk to people without first having to explain what you are experiencing.

3 Easy Steps to Become a Table Captain at the Feeding Matters Virtual Event

Published by Feeding Matters on Oct 12, 2020

Interested in becoming a table captain? You are in the right place.

Being a virtual table captain allows you to participate in our virtual event and invite your network to hear about how Feeding Matters is doing important work to accelerate identification, ignite research, and promote collaborative care for children with pediatric feeding disorder. This event unites families, clinicians, donors, and supporters for a captivating afternoon celebrating advances in PFD.

 

Follow these three steps to become a table captain.

 

1. Email events@feedingmatters.org to let Feeding Matters know you are interested in being a table captain.

2.  Invite 9 of your friends, colleagues, and family members to  and have them register here.

3. Attend the 40 minute event on November 12th at 9:00am (Arizona Time)/ 10:00am (Central Time)/ 11:00 (Eastern Time).

 

See it is that EASY! We look forward to seeing you on November 12th!

   

Volunteer Spotlight: Jennifer Wilson

Published by Feeding Matters on Oct 01, 2020

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Jennifer Wilson.

Tell us a little bit about yourself and what you do.
I am an Assistant Professor at the University of Tennessee Health Science Center in Speech Pathology. I specialize in pediatric feeding and swallowing disorders.

What motivated you to become involved with Feeding Matters?
It is an incredible resource for professionals and families of children with Pediatric Feeding Disorders (PFD). Feeding Matters is a unique organization in that it was started by a parent. Their mission is to educate professionals and families/caregivers. Their support of a team approach is such a great model and really strengthens our ability to work with PFD.

How have you volunteered with Feeding Matters?
I serve as Southern Regional Lead for Community Ambassadors.

What has been your favorite part of volunteering with Feeding Matters?
I love the opportunity to share information about Feeding Matters with the graduate students, area professionals and families.

What sets Feeding Matters apart from other organizations?
Their ability to provide quality professional growth and serve families.

A Message from Our New CEO

Published by Jaclyn Pederson, Feeding Matters CEO on Sep 15, 2020

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.

In gratitude,

Jaclyn Pederson, MHI
Chief Executive Officer

PFD Advocacy in Action: PFD as a stand-alone diagnosis

Published by Jaclyn Pederson, Feeding Matters CEO on Aug 28, 2020

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: programs@feedingmatters.org.

Click here to donate and learn more about the Power of a Name campaign.

The Power of Resilience: Brandt and Krya Perry

Published by Feeding Matters on Oct 19, 2020

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.