Life notes: Parents advocating for children makes a difference

Dawn McCoy never dreamed she’d be using the professional skills she honed as an education advocate to secure appropriate resources for her child. In recent years, however, the Chesterfield County resident has done what she thinks most mothers would do, if necessary: become an expert in her son’s rare chronic illness, help establish a support group, and organize a conference to raise awareness.

McCoy has used the fear, uncertainty and frustration that often come with raising a special-needs child as fuel to create a life of acceptance and reasonable contentment for herself,
her son and others who are living with the realities of eosinophilic esophagitis.

Eosinophilic esophagitis (pronounced EE-Oh-SIN-Oh-Phil-ic esophagitis) is a chronic immune system disease that leads to inflammation of the esophagus. It is often caused by foods and allergens. Many who live with the condition have problems swallowing solid food or beverages, and many, like McCoy’s son, Joshua Cole, receive their meals in pureed form. Joshua also
suffers from eczema and asthma.

“You don’t know what’s happening,” McCoy recalled about the period when Joshua first became ill, about 10 months old.

McCoy’s persistent research and questioning of doctors led to a definitive diagnosis when Joshua was about 18 months old.

“This is a rare condition, and 1 in 2,000 people have this and don’t know,” said McCoy, a resource development consultant with the Virginia PTA who also serves as a leadership development consultant and speaker.

Joshua is 3 and requires special care daily. Visits to the ER, constant access to an EpiPen and vigilant monitoring of his environment and ingredients in all food he consumes are the norm.

Rather than surrender to helplessness, McCoy decided to be proactive.

She eventually met another mother whose son suffers from eosinophilic esophagitis, and together they started a support group for youths, adults and parents of young children with the condition. The 60 members of the Central Virginia Eosinophilic Support Group hail from metro Richmond, Charlottesville, Fredericksburg and the Hampton Roads area.

“We have compared coping strategies, (tips) on where to shop and notes on medical treatment and support,” McCoy said. “I can’t tell you how encouraging it is to hear each other’s stories.”

To best meet Joshua’s needs, McCoy found herself connecting with professionals and families across the nation and around the globe, which led to the idea of hosting a one-day conference in Richmond.

“There’s a national conference every year, an extraordinary gathering of the top doctors, allergists, neurologists and immunologists,” she said. “Most of us cannot afford to go because treatment for our kids is so expensive.”

McCoy has solicited support from local businesses and health care organizations to fund an event that will help patients, caregivers and families learn more about the disorder and how to cope. The daylong conference will be held at the Children’s Hospital of Richmond at VCU on Nov. 8 and costs just $10.

McCoy learned this month that she is a nominee for the Children’s Hospital 2014 Spirit of Advocacy Award. Winners will be announced Oct. 29.

“It’s humbling, because I feel like I’m just doing what I need to do for my child and to help raise awareness for other families, because there’s a need,” she said. As a parent, “you have to have the courage to speak up, ask questions and ask for help and resources.”

Stacy Hawkins Adams is the mom of a son and daughter ages 13 and 16. She is also a Chesterfield County-based novelist, communications professional and volunteer child advocate. Contact her at Stacy@StacyHawkinsAdams.com.

– Stacy Hawkins Adams (source: richmond.com)