The Butterfly Effect

“Butterfly Kids” seems like such a peaceful and happy phrase. In reality, the disease associated with this term is a painful struggle that currently has no cure. Butterfly Kids are children diagnosed with a rare connective tissue disease called Epidermolysis Bullosa (EB) that makes the skin as fragile as butterfly wings and causes painful blisters both internally and externally with the slightest amount of trauma to an area. According to the Stanford School of Medicine Department of Dermatology, the condition affects only 20 in 1 million live births in the United States but one of our own children here in Saline County struggles with EB.

Nine year old Anne Marie Cox was born with skin missing around her feet and hands and soon after birth was diagnosed with EB. Anne Marie must be wrapped daily similar to how a burn victim is wrapped, and 2 to 3 times a week she must endure baths so painful that morphine is required.

Everyone who meets Anne Marie is inspired by her strength and perseverance and that is especially true for her family. Her mother, Kandi Cox tells us, “Anne Marie has been gifted with an amazingly strong personality. Living with her daily, I can’t imagine the pain she suffers through and endures. She is such a testimony about what perseverance looks like and touches lives everywhere she goes.” In spite of the suffering Anne Marie lives with, she never meets a stranger, is funny, loves to pose and take pictures with siblings and friends and enjoys music and singing.

As adults, most of us reading about the reality of Anne Marie’s life probably think to ourselves, “I wish there was something I could do.” It took the love, passion and determination of 7-year-old Bethany Walker to make a life-changing difference for Anne Marie.

The Walker’s first met the Cox family when they moved into the same neighborhood in 2013. According to Bethany’s mother, Janet, the entire family had an instantaneous bond. “We met as a result of the kids all playing around outside in the neighborhood and our families just hit it off from the beginning. Bethany and Anne Marie enjoyed playing together like any two girls the same age would.” Bethany soon became aware of the severity of Anne Marie’s condition and knew that there were certain things that Anne Marie badly needed to help ease her pain. One of the greatest, and seemingly most unattainable needs, was a saltwater pool that would help heal the blisters on her skin and could also be utilized for aquatic therapy.

One evening the Walkers were eating out and the waitress was wearing one of the rubber band bracelets that have become so popular. The family mentioned the bracelet to the waitress in the course of normal conversation, and the girl told them that her younger sister made and sold the bracelets. When Bethany heard this her eyes lit up and she began to think about the possibilities. Janet recalls, “Finally Bethany said, ‘I could make those and sell them!’ Then my husband Steve said, ‘and you could use the money for the saltwater pool Anne Marie’s needs.’” Bethany loved the idea and never backed up from it after that.

The family expected her to slow down after a few hundred dollars were raised but according to Janet, God had bigger plans. “This is when God showed up and showed off and used a 7-year-old girl and some rubber bands to do the impossible and overwhelming.” Bethany’s Uncle Danny, her grandmother and mom Janet drove every week to over 40 businesses in central Arkansas to replace bracelets and pick up donations. “Bethany could not have done it without help from family, especially her Uncle Danny who was instrumental in getting businesses to place baskets for us,” says Janet. “A lot of her friends also pitched in to help make bracelets and keep up with the demand.”

Through the sale of bracelets on Facebook and in over 40 businesses, a few fund raising events and matching donations, Bracelets by Bethany, the official name of the organization, has raised over $47,000 in just 19 weeks, enough for installation of the pool, retaining wall and a fence. This is an amazing accomplishment for a 7 year old and her family, but the Walkers are quick to share credit for the success of the project with the entire community. “Had the community not rallied around Bethany, she likely would have fizzled out and not been inspired to continue and make a difference for Anne Marie.”

Future goals include an outside bathroom and storage building which would allow Anne Marie immediate access to facilities and storage for medical and nutritional supplies she needs on a daily basis. A wheelchair lift is also needed for the pool.

Because the condition is so rare, government funded research is minimal, but the Cox family is hoping to send Anne Marie to Cincinnati where the best EB doctors in the country are located to participate in a “team approach” treatment for the disease. For now, many therapies and supplies Anne Marie needs are not covered under her insurance and any additional donations received would help with these on-going expenses. “We are forever grateful for the love and support the Walkers and the community has shown to our family. It is overwhelming to know that so many are sacrificing, supporting and praying for our family and specifically Anne Marie.”

As for Bethany, she is already working on her next project to make a difference. In addition to bracelets, Bethany is now making beautiful bookmarks and is in the process of building up inventory. The next project Bethany selects will be announced on her Facebook page, “Bracelets by Bethany”, where visitors can see pictures of Anne Marie, Bethany and the completed pool.

For those who wish to donate, an account has been set-up at First Security Bank for Anne Marie and checks should be made payable to “Spreading Anne’s Wings”. To follow Anne Marie on her journey, like her on Facebook at “Spreading Anne’s Wings – I SAW Hope.”