South Sound families share children’s fight with rare disease

Eosinophilic esophagitis makes it difficult for them to eat many foods

Staff writerMay 23, 2014 

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    To learn more about Empower and eosinophilic diseases, visit empowerwa.blogspot.com. Also visit the American Partnership For Eosinophilic Disorders at apfed.org.

Hayden Knight, 6, has a rare disease that leaves some people unable to eat. The disease is slowly destroying Hayden’s esophagus — and will last for life.

“By the time he’s an adult, he’s likely going to be eating through a straw,” said his mother, Angie Vos.

The Olympia woman said Hayden was constantly sick for the first 2½ years of his life until doctors finally pinpointed the problem: eosinophilic esophagitis.

Abbreviated as EoE, the condition is named after the type of white blood cell — called eosinophils — that injures body tissues when present in higher-than-normal numbers. The reaction is often triggered by food proteins and environmental factors. The disease can be managed, but there is no cure, according to the American Partnership For Eosinophilic Disorders.

Patients must adhere to extreme dietary restrictions if they want to survive. Fruits, vegetables, seeds and grains are “safe” foods for Hayden, said Vos, who cited examples such as dairy-free cheese and special oatmeal.

There is a constant effort to introduce foods with protein to Hayden’s diet, and the process requires a trial run with a new food. Hayden then endures a biopsy inside his esophagus to determine whether the food has triggered the allergic response associated with the disease, Vos said.

The most recent trial involved soy products. Hayden underwent his 12th biopsy, and the test showed damage from the soy products, Vos said. In the past, doctors have suggested removing all foods from Hayden’s diet and feeding him elemental formula through a tube, but Vos said that’s a move they’re not ready to make.

The health problems are compounded by a fragile immune system. Hayden has 28 known allergies that vary in degrees of severity, Vos said. She recalled the time when Hayden caught an infection — and went into life-threatening shock — by rubbing his eyes after touching a handrail.

Despite his health setbacks, Hayden still smiles and plays like the kindergartner that he is. However, food is a daily central focus for Hayden and family. During his latest recovery, Hayden has been writing down favorite recipes such as pickle dip, which calls for sunbutter (sunflower seed spread), chocolate syrup and a drop of water. He even wrote a warning on the recipe: there’s a 10 percent chance the pickle dip will make you cough. Another recipe in his book is for “Hayden’s Juice.”

“If he writes it up, I have to make it,” Vos said of their game. “It’s part of our schoolwork.”

Connor Colerick, 4, was diagnosed with a similar condition at 18 months. At the time, his parents were stumped as to what was causing Connor’s constant projectile vomiting.

“Anything you fed him made him sick, sick, sick,” said his mother, Catriona, an Oakville resident. A recent 3-month effort to slowly introduce a new food — a type of bagel — resulted in extensive damage to Connor’s throat, including bleeding and ulcers, she said.

“This food that we thought was safe was making him extremely ill, and we had to pull it,” she said, noting the difficulty of explaining to her child why the food had to be taken away. “They don’t understand.”

In 2011, Vos and Colerick co-founded a support group called Empower for parents with children suffering from eosinophilic gastrointestinal disorders. The group’s network consists of about 60 families throughout Washington and is a source of information and like-minded people, the women said. Empower hosted a Hope Walk on May 18 in SeaTac to raise awareness and money for research.

“I know there are more of us out there,” Vos said.

One person in the network, Kirkland resident Jeff Schwartz, led an effort to pass legislation that provided relief to families dealing with the disease. Gov. Jay Inslee recently signed House Bill 2153, which now requires health insurance carriers to cover the cost of elemental formula.

Sometimes the special formula is the only nourishment for people with the disease. A pack of four cans costs $144, said Colerick, adding that Connor needs one can of formula every one to two days. Combined with the cost of a thickening agent, Colerick said she had been spending about $1,200 a month — after twice being denied insurance coverage for the formula.

In some ways, the formula will never substitute for solid food. Connor once wanted food so bad, he sneaked a gummy vitamin from his sister’s stash and ended up violently ill for three days, Colerick said.

On the other hand, Hayden is a couple of years older and understands the consequences of eating the wrong food, his mother said.

“He knows what it feels like to nearly die,” Vos said. “He’s very careful.”

Andy Hobbs: 360-704-6869
ahobbs@theolympian.com

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