Family Seeks Answers While Facing Uncertain Diagnosis

Faced with hopelessness, the King family sought answers.

Kendall King was born in 2005 with a heart defect that required four open heart surgeries in the first four years of her life. Each surgery was successful but, as time passed, other issues stood between Kendall and a healthy future.

Beginning in 2006, she developed a persistent chronic pneumonia that doctors couldn’t cure. She was regularly hospitalized to treat the pneumonia. Steroids were prescribed to help keep her lungs clear, but they caused their own worrying side effects—including adrenal insufficiency. Chronic conditions, side effects to medications and post-surgical recovery were all taking their toll on her body.

Then, in 2012, Kendall’s doctors told her parents that there was nothing more they could do and that she would always have pneumonia. “We could not find our path forward,” says Kendall’s mother, Kelly King. “We were told there was no hope. We were lost.”

King didn’t know what to do except to keep searching for better answers. She and her husband, Kyle, Chaska residents, talked to holistic doctors and researched non-traditional medical practices and kept asking questions. In 2015, they found functional medicine.

The Institute for Functional Medicine defines the practice as being “an individualized, patient-centered, science-based approach that empowers patients and practitioners to work together to address the underlying causes of disease and promote optimal wellness” and goes on to say that it requires a great deal of personalized information about a patient—including genetic profiles and biochemical analysis. The underlying philosophy holds that one condition may have many causes and that “one cause may result in many different conditions.”

Functional medicine focuses primarily on chronic conditions, like Kendall’s pneumonia, and its practitioners say at least 50 percent of all adults have at least one chronic condition that they may not even be aware is causing what may seem to be unrelated health problems. By getting to the root of the real problem, and not just treating the symptoms, functional medicine doctors believe they can cure problems that more traditional doctors have given up on.

There are critics of the practice, however, and one of the most often repeated criticisms is that too many tests are run at too great an expense to try to find patterns and connections that may not even be present. Which is why most insurance companies don’t cover the diagnostic practices nor some of the treatment recommendations.

And that’s what led the King family to start a foundation called Hope Rooted. King co-founded Hope Rooted with Amanda Kacuba, who is trained as a chemist and has worked in the pharmaceutical industry.  Kendall is much healthier since she began working with Patrick Hanaway, M.D., a functional medicine doctor, founder of Minnesota Holistic Medicine and retired assistant professor at the University of Minnesota.

Kendall still struggles with chronic problems that King believes relate to tissue inflammation. Inflammation in her lungs exacerbates the damage from the pneumonia. Her parents are trying to help her control her respiratory problems with a diet that focuses on eating non-inflammatory foods. She also takes nutritional supplements to help her overcome some of the deficiencies she’s developed after years of surgery and aggressive prescription drug treatment. Each step that Kendall’s parents have taken to get her healthy represents a lot of research and questioning. Trips to the Cleveland Clinic and conversations with many doctors have given King a wealth of knowledge about what works for her child and what doesn’t.

King wants to share the things she learned about all the treatment options that have helped Kendall, but she knows many families can’t afford to pay out of pocket for medical care that their insurance won’t cover.
 
Hope Rooted offers financial help in the form of small grants to families who want to pursue a functional medicine path for a child with a chronic condition. The medical advisory board of the foundation—which includes a Naturopathic doctor (Sarah Jean Barrett), as well as Bill Manahan, M.D.—also offers help and guidance in finding doctors and selecting treatments. King knows how overwhelmed parents can feel when trying to find answers for a sick child. Hope Rooted was founded to offer financial support, but also information and advice to make a scary situation a little more manageable. “It’s not the easy answer,” King says. “We want to help parents who want to try work through all the possibilities.”

Hope Rooted is just getting started. King didn’t know anything about how to create a foundation nor did she have any idea how much paperwork and detailed regulation she’d have to deal with, but she was determined to follow through on the idea. “I just felt as though I was supposed to do this work,” she says. The foundation has already helped a few families with grants and with information.

One parent who has been helped by Hope Rooted is Alyssa Senescall. Her daughter Marley suffers from a rare and poorly understood condition called PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). King heard about the Senescall family’s struggles and reached out to Alyssa. Senescall says that, at first, she and her husband were reluctant to accept financial help from Hope Rooted, but she was so impressed with the organization and so committed to helping her daughter, that she overcame her reluctance. “It’s amazing with these two women have done,” Senescall says. “They make everything so clear and professional. Kelly and Amanda have done an amazing job checking in with us.”

The Senescall family was already working with doctors but were feeling overwhelmed by the cost of treatment and the amount of information to sort through. Senescall also attends a support group of parents with children who are dealing with some of the same issues Marley is facing. “It’s really helpful to talk with other people and hear about treatments—even if they haven’t worked. It allows you to check some things off the list,” she says.

“We are very grateful for the help we’ve gotten from Hope Rooted,” Senescall says. “It’s made it possible for us to get Marley to treatment more frequently …the whole family is grateful, but it’s our daughter who has benefitted the most.”

King is also grateful. “The big story we want to tell is that Kendall found healing,” she says. “We want other parents with children who have chronic conditions to know that there are answers out there. Too often they don’t even have a diagnosis—their lives have been disrupted by their child’s illness, and they need more tools.”

King is proud of the work she’s doing through Hope Rooted. “We exist to help people,” she says. “We’re here to help people find answers.”   

Grant information is available at the website here.