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'Bracelets by Bethany': 9-year-old raises $47,000 for friend with 'butterfly disease'

Nine-year-old Bethany Walker has a very special motto: “You’re never too little or too young to make a difference.”

Since February 2014, Bethany has been weaving rubber band bracelets and selling them to raise money for her friend, Anne Marie Cox, who has epidermolysis bullosa (EB), a rare disease that causes her skin to blister and tear from friction or trauma. Children who live with EB are often called "butterfly children" because their skin is said to be as fragile as a butterfly's wings.

By selling the bracelets on her Facebook page, “Bracelets by Bethany,” the 9-year-old has raised $47,000 for Anne Marie's family to afford a therapeutic saltwater pool, one of the few therapies available.

Bethany’s mom, Janet Walker, said that when her daughter came to her with the bracelet idea, she thought it was very sweet, but that she wouldn’t be able to raise more than a few hundred dollars.

“You never want to tell your kid ‘no, you can’t do that’ when there’s a possibility they could succeed,” Janet said. “So after discussing it with me and my husband, [Bethany] went with it and knocked the ball out of the park.”

It took Bethany only 19 weeks to raise the money by fundraising at restaurants, placing baskets at businesses and posting on Facebook. When the construction of the pool finished last month, the Cox family hosted a swim party with lots of food, family and fun to celebrate.

“It was really, really great,” Bethany said. The two girls held hands as they got into the pool together for Anne Marie’s first-ever swim.

Bethany said that when she and Anne Marie hang out, they usually stay inside and “play with our Barbie dolls and American Girl dolls.” Every once in a while they have a sleepover and when they do, it is a really big deal for Anne Marie.

Kandi Cox, Anne Marie’s mom, said that aquatic therapy is one of the only physical therapies available to children with EB. She is especially thankful for the pool because it has brought their family together and allowed her daughter to feel like a regular 10-year-old girl.

“Anne cannot go out outside and ride a bicycle. She cannot jump rope or roller skate. But now she can spend time with her family and friends and swim without it causing harm to her,” Kandi said. “It is so much more than a swimming pool. It is really life-changing for this child and for our family.”

When Anne Marie was born, she was missing skin around her feet and wrist areas. As the owner of an adoption agency, Kandi was originally supposed to place Anne Marie with another family. But after the doctors diagnosed Anne Marie with the incurable disease, Kandi decided to adopt the baby as her own.

“The doctor told me that as a child, [EB] is the absolute worst thing you could have. He said her life would be a life of misery, if she even made it out of the hospital,” she said. “You hear that, and as a mom, you want that child to be able to live as normal of a life as possible despite the obstacles in the way.”

According to Kandi, the disease has a mind of its own—there’s no rhyme or reason to the pain her daughter feels on a daily basis and there is no way to know when the pain will strike. When she can, Anne Marie goes to school for an hour a day and gets one-on-one instruction.

“God gave her an extra dose of personality just to be able to endure the life that she has,” Kandi said. And in part thanks to Bethany, Anne Marie now has another way to cope.

When reflecting on Bethany’s fundraising success, Janet says she has been overwhelmed with kind messages from people all over the world who have heard the girls’ story and been touched by their friendship.

“Bethany was obedient to what God had in store for her,” Janet said. “And while we are blessed to be her parents, I think about how many more people could be amazing if we just sit back and take a chance on them.”

In pursuit of her goal to help those in need, Bethany is continuing to make bracelets even though Anne Marie’s pool is complete. Her next goal is to provide financial aid to the family of a young boy named Riley, who lost his battle with cancer a few months ago.

Bethany was also nominated for a $5,000 college scholarship for her dedication to community service in a contest presented by JCPenny, IZODed and NOW Music. The contest ends on August 10th.

Her final remark? “I want kids to know that they can make a difference in the world too.”

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