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1 girl + 1 community = big difference

Brionna & family have right equation to raise awareness

Never underestimate the power of one: one girl, one mom, one family, one community, one cause.

When the Myers family of West Terre Haute, IN learned their daughter and sister, Brionna, had mitochondrial disease, they went on an awareness-raising and fundraising rampage. And they will never stop.

From Day 1, mom Karen Myers has believed, “One little girl and one community can make a difference.”

In 2013, Karen and Brionna set a goal of raising $2,500 for Mito in six months. “If we can raise that, we’ve done good,” Karen said. The family raised that … and then some. After six months, Karen, her husband, Martin, their sons, Cass, 25; Alex, 21; Jarrett, 16; Preston, 15; and daughter Brionna, 9, raised $13,000! By the end of this year, Karen expects the family will have raised $40,000! The family donates the money to the United Mitochondrial Disease Foundation and MitoAction.

“I can’t stop this disease but I can raise awareness and money,” Karen said. “There are things I can do for her. We need to raise awareness of this disease!”

Karen stayed in bed and cried for a month after learning Brionna was diagnosed with mitochondrial disease, Complex I, III, and IV. “Nothing can prepare a mother or father to hear this. I was devastated to think that she has a life-threatening disease with no cure,” Karen said. “It was the first time we had heard of this disease so we started educating ourselves. We were in complete shock.”

Brionna’s story

Brionna has battled health issues her whole life. She was born with an enlarged heart, a club foot, and hip dysplasia. She was late to talk, late to walk, always more tired than other kids, and always a little behind. When she got sick, it took her longer than others to recover.

The turning point came in February 2011. The whole family got sick but Brionna ended up in the hospital. The family was told she had RSV and maybe pneumonia. In a few hours, everything changed and she ended up in intensive care for three weeks. Her lungs collapsed and were 30 percent damaged. At one point, she couldn’t walk.

One doctor said she has muscular dystrophy. They ran tests and an MRI and still didn’t now what was going on.

Brionna had to learn how to walk again; she underwent speech and occupational therapy; she started using a wheelchair to reserve her energy. “She never got back to her baseline,” Karen said.

In October 2012, Brionna had a muscle biopsy and in December, the family finally had answers. “We spent two years going through this,” Karen said. “If I had picked up a pamphlet (about Mito), I would have known it was Mito.”

The family has explained to Brionna that she has Mito and she knows a little about the disease. “She had just turned 7,” Karen said. “She knows the basics but not all of it. She needs to be a child. We worry enough for her.”

Brionna is a sweet, happy, loving little girl with an amazing positive attitude. “She’s friends with everyone,” Karen said. “She never leaves school without telling everyone she loves them.”

But as she gets older, she has more questions. And she wants to be like the other kids. “She wants to dance; she wants to do cartwheels,” Karen said. But she never loses her positive attitude and happiness. “When you’re diagnosed at a young age, you accept it more.”

When she’s not raising money or awareness, Brionna said she likes to do crafts, draw, color, and play with stickers. In school, she likes art and music classes, but doesn’t like bullies. She also loves DisneyWorld (where she went for her Make A Wish trip), the beach, and the zoo.

When asked what she likes most about raising money, Brionna said, “For kids, to help them and to get them some medicine.”

Getting the word out

Karen feels blessed to be part of an amazing community. “The whole community came together like I’ve never seen. I’ll never be able to thank them enough.”

In that first year, there were restaurant nights, walks and runs, Mito Mondays, a balloon release, auctions, concession nights, sporting events, bake sales, T-shirt days, and so much more. The first event, in which Tumbleweeds restaurant donated 20 percent of its proceeds from a Mito day, raised $1,000. “People waited two hours to get into the restaurant,” Karen said.

Their local Channel 10 TV station did a story on Brionna going back to school and about Mito, which got things going.

Karen started a Facebook page called “Prayers & Love for Brionna.” “I set a goal of 500 people to raise awareness.” The page quickly reached 5,000 likes and now has more than 15,000 likes. Their goal is now 20,000 likes!

School nurses educated Brionna’s whole school about Mito. Brionna accompanied the high school football team to the Indianapolis Colts’ stadium to raise awareness. The high school volleyball team held a Mito night. The middle school held a walk around the track to raise money. An elementary school raised $600. The Myers worked a concession stand at the ballpark in return for a percentage of the night’s proceeds.

Brionna is a regular at the fire department and has been the grand marshal — or grand princess — at their parades. And the mayor of Terre Haute has made September Mito Awareness Month in honor of Brionna.

The family now focuses on three main events: the Hope for Brionna 1-mile walk and 5K (which regularly draws 500 people!); a quarter auction; and a Harvest Moon Dance for high school kids, which is a joint effort with United Cerebral Palsy even though Brionna doesn’t have CP.

Karen has spoken about Mito to women’s groups, church groups, a full congregation, firefighters and EMTs, even medical students. “I’ve never done anything like this before. It’s so far out of my comfort zone,” she said. “My legs were shaking, but I’m more scared by my daughter having this disease living in her body than I am speaking to audiences.”

In the last few years, four billboards have graced the town of West Terre Haute, featuring a giant picture of Brionna and the words, “Help me raise awareness of mitochondrial disease.” The billboard puts a face to the name Mito. “I want Mito to be a household name,” Karen said.

She hopes that one day the green ribbon symbolizing mitochondrial disease will be as well known as the pink ribbon for breast cancer.

“The only thing that helps me is to do this,” Karen said. “My therapy is to raise awareness. It’s the only thing I can do for her. I’m her mom. It’s my job to step up.”

People have told Karen to take a break. “But I can’t. Time is not on her side. I have to do everything I can as her mother. I can do my part to make a difference for Brionna and other Mito kids.”

Worth the effort

Karen admits this is all a lot of work. Not only is she taking care of Brionna, but the boys are involved in sports and her husband was diagnosed with cancer.

She noted that when Martin was diagnosed with cancer, he immediately had appointments and surgery scheduled, a plan in action, support in place. “Everyone knows what cancer is,” Karen said. “He had treatments … he had hope. Mito kids don’t.” Martin’s cancer is in remission.

People have emailed Karen for advice on how to cope, what to do, how to move forward. “Get a group of people and ask if they’d help you start a group because you’ll need someone to help you,” Karen offered. She created Team Brionna, which has been a godsend. Many of the members are nurses or teachers; all are people Karen knew and respected and could count on.

Enlist the kids in your family, their sports leagues and their friends. Reach out to schools, teachers, coaches, community clubs. Contact local stores to see if you can set up a table and hand out information. The possibilities are endless.

The Myers are a normal middle-class sports family. Martin is a contractor and Mason; Karen is a stay-at-home mom.

“Anyone can do something small,” Karen said. “Raise awareness. Reach out through Facebook. Parents can step up and make a difference for their child. Every little bit helps. No matter what, keep plugging. If I can do this, anyone can do this.”