Engineer founded organization to support families affected by children’s disease

The following article and photo are courtesy of energy.gov.

Beth Walker, an engineer in NNSA’s Kansas City Field Office, knows all too well about social distancing and enhanced cleanliness measures. Her youngest son, 8-year-old Nathan, was diagnosed at birth with Severe Combined Immune Deficiency—a rare genetic disease that causes a child to have little or no immune defenses. Nathan has spent more than a year of his life in the hospital for treatments and even more time in strict home isolation after receiving a bone marrow transplant.

Today, the Walkers spend all their time at home in COVID-related quarantine. Although medical interventions have improved Nathan’s immune system, he is still highly susceptible to illnesses and must take extra precautions, which means the entire family, including his 11-year-old brother Isaac, must do so also. 

“Right now it is the same thing that many are doing, which is staying at home,” Beth said. “We get groceries delivered most of the time and minimize times we have to leave the house. It’s not just about where Nathan goes, but also about where we all go and how we are exposed (to potential pathogens). That impacts his brother too, which is hard. We went through a drive-through recently just to get out of the house.

Their medical journey led Beth to recognize the needs of other families with children fighting cancer or blood diseases. She founded Every Day a Hero, an organization to helps families with children who develop a condition known as neutropenia from chemotherapy treatments or radiation. If a child’s neutrophil count is too low, they are at severe risk from immune deficiency and cannot go out in public. In such cases a common cold can be life-threatening. 

Every Day a Hero connects families with each other, honors siblings whose needs are often set aside during treatment cycles (which can last more than two years), and helps kids—and their families—feel “normal” for a change. The charity hosts an annual event to help families affected by childhood disease.

Her first event in 2015 was a big success. More than 30 non-profit organizations attended, and a disinfected, safe play area was created for the children. They had safe food to eat, art activities to make and characters to greet such as costumed superheroes.

There were long stretches where we could not be with family or friends. We had to reach out in other ways so that we were not isolated. It is important to reach out when you need help. We are not meant to travel the journey alone.

“It turned out much bigger than I could have ever dreamed. We had more than 100 kids the first year,” Walker said.

For the last seven years, they have succeeded in hosting the event, which has grown by leaps and bounds despite various obstacles. “There is an amazing team of people who are passionate about this event, and everyone has fun. Many kids and parents tell us they look forward to our event every year,” said Walker.

The organization is now officially a program offered by Camp Quality Missouri. “Since the beginning, Camp Quality took us under their wing and is the reason Every Day a Hero is possible,” she said. “I am still the founder and director of the organization, but without a lot of the administrative burden.”

Unfortunately, this year’s event has been cancelled because of the risk from COVID-19 related challenges. But Beth still stays active with families. “During the pandemic, I have created a Facebook group to encourage others. I use many of my experiences with Nathan and my faith to help people deal with situations and feelings they may be experiencing. Everyone is now going through challenges related to the pandemic situation.

“You are only as isolated as you allow yourself to be,” she says. “Social media and communication is powerful. There were long stretches where we could not be with family or friends. We had to reach out in other ways so that we were not isolated. It is important to reach out when you need help. We are not meant to travel the journey alone.”