HARTSBURG, Mo. - Pictures and handmade crafts adorn the walls of Mel Reifsteck's Hartsburg trailer. A mother of three and grandmother of eight, the 67-year-old never runs out of items to hang. Decorated shovels she makes for her relatives are mounted on one wall and dozens of family photos are scattered on another.
Today, standing in her cluttered kitchen, she grabs her favorite item off the refrigerator. It's an image of a smiling blonde boy clutching a toy penguin - her 7-year-old great-nephew Connor Brotherton, St. Louis.
"Here's my baby," she says, motioning toward the picture. "He always has a smile on his face, unless he's not feeling good."
Born with mitochondrial disease, Connor often has bad days. His cells have trouble converting food into energy, leaving him unable to walk or talk. He relies on a wheelchair to get from place to place, and clapping is the only way for him to respond to questions. One means yes, two means no.
Like the nearly 100,000 others in the United States affected by the cell disorder, Connor can only take a combination of vitamins each morning and hope his body responds. Despite increased research, there is no cure.
"It just attacks the muscles," Reifsteck says. "Life expectancy for these children is in their teens."
She opens up a blue folder, documents spilling onto the dining room table. It's her Connor folder. Whenever she raises more money for research, she proudly wedges the evidence inside.
It's filled with papers, most letters from companies that offered up items for a raffle she organized last month in Ashland. A note from Six Flags says it is "pleased to provide your organization with two 2014 one-day tickets to Six Flags St. Louis." Another, a voucher from the St. Louis Cardinals, reads "redeem this for two tickets for a Monday or Thursday home game during the 2014 home season."
As she sits in the dining room of her Hartsburg home, Jeopardy still playing in the next room, she can't help but sift through the old documents. It reminds her of everything she's done to help that smiling boy up on her fridge, as well as all there is left to do.
"I will keep trying to do what I can," she says. "I'd do anything in the world for my family."
A great aunt's mission
She checked her email on that Friday in February just like she does every day. Even though she loathes texting and thinks Facebook is nothing but a "gossip column," she uses a Yahoo account to keep in contact with her family.
One message sat in her inbox, and it was sent to more than 40 people. Her brother, Rich Brotherton, 70, St. Louis, had something he needed to share.
The message went on for paragraphs, but Reifsteck stopped as soon as she read the first line:
"Can you find a cure for my grandson?"
Slowly, she continued to read. In the email, Rich shared everything - that his grandson had a cell disorder, that there were almost no treatment options, that he wanted his family to help raise money for research.
Reifsteck remembers going numb. Feeling the shock of Connor's bleak diagnosis, she lowered her head and wept.
"It broke my heart," she says. "I read it on the computer and just cried."
It was nearly five years earlier that Rich found out something was wrong with his grandson, the boy he's taken care of since he was a baby. Noticing some irregularities with the child - his inability to walk or talk, his daily struggle to lift his head up - Rich took him to a specialist in Atlanta. One muscle biopsy later, the doctor had a feeling they were dealing with mitochondrial disease.
Connor continued to visit physicians over the coming months, receiving one diagnosis after another, until there was a medical consensus. At a certain point, enough doctors had said it: his cells weren't right.
Although the disease felt foreign to Rich at first, he felt a responsibility to do something in the search for a cure. He started researching fundraising events, eventually signing up for the United Mitochondrial Disease Foundation's Energy for Life Walkathon in St. Louis.
"My first instinct was, "What can I do to help this child?'" Reifsteck says.
She started planning a raffle and bake sale. A longtime quilter and baker, she had no shortage of items to offer. She also had little trouble planning the event, given that she's helped put on the Hartsburg Pumpkin Festival for the past 20 years.
Still, gathering the items for bidding was difficult. A sizeable number came from friends and family. Others were the result of fliers and newspaper advertisements. The night's biggest bids were provided by businesses like Walmart, Break Time and IB Nuts in Columbia.
In the months leading up to the event, Reifsteck contacted close to 200 businesses. Even after many messages received no response, she kept sending them.
"She just kept going further and further and further," Rich says. "Every time she would write us I would say, "Wow, she's going to another level.'"
When the crowd cleared out at the Ashland Senior Center, long after Connor won the crowd over with his affinity for clapping after the winning bids, $2,600 was raised for the foundation. It will use the donations to pursue its mission of finding a cure.
Reifsteck says she's thankful for all the money raised, but she wishes there could have been even more at the end of the day.
"That wasn't what I wanted," she says. "I was a little disappointed in the community support."
She knows what the future may hold for her great nephew, and she knows she wants to help change that. There's no time to be content.
The uncertain future
Reifsteck has a hard time explaining what it's like to know there's not much she can do for her great-nephew. Try as she might, she can't find the words.
"It makes me feel really bad to think about it," she says after a pause. "I would trade my life for his. I've lived mine, he hasn't."
The only thing for Reifsteck to do is continue raising money. That's the way she sees it.
She's already laying the groundwork for a number of fundraising events over the next year. After speaking to her friend's husband - a proud Harley owner - she has plans to hold a fundraiser at a large motorcycle rally in Sturgis, North Dakota. Also, at this year's Pumpkin Festival, she is going to set out decorated white buckets for donations. The photo glued to the top is the same one that sticks to her fridge.
For Reifsteck, it's important that there's a continuing effort. And she's far from alone - Connor has supporters all over Mid-Missouri and St. Louis. Aside from family, many of Reifsteck and Rich's friends have joined the fight.
They even have a name for themselves: Connor's Coyotes, a moniker that comes from the 7-year-old's knack for leaning his head back and howling. The group made neon-green T-shirts with the name plastered on the front.
Reifsteck often wears hers around her Hartsburg home. She says she's proud of what they're doing to help UMDF in its mission.
"If they can help even one child, it would be well worth everything that we're doing for this foundation," she says.
Chuck Mohan, CEO and executive director of UMDF, credits groups like Connor's Coyotes for raising awareness about mitochondrial disease. In a small town like Hartsburg, he explains, there may not be much knowledge on the rare condition.
Increased awareness means more fundraising for Mohan and his colleagues. Through donations, the organization has been able to help the general public understand the condition over the past two decades. UMDF has also discovered the intersection the condition has with illnesses like Alzheimer's disease and cancer, an important step in finding a cure.
"I am very hopeful where research is now," he says. "We can now hone in and address the problems with mitochondria."
Like Reifsteck, Mohan's fight is personal. In 1995, he lost his daughter Gina to a form of mitochondrial disease. He often thinks about the late 15-year-old, the girl who participated in swim team and cheerleading squad despite her weak muscles.
He says his past makes him feel connected with Rich and Reifsteck. The same goes for the thousands of supporters he knows are out there.
"Mel is the epitome of the type of support we have across the country," Mohan says. "We congratulate people like Mel because they have chosen to be a part of the cure instead of a victim of it."
Reifsteck feels like it's her responsibility to help in whatever way she can, even if it's making a quilt for Connor in her free time. It's just the way she's always been.
"I'm like my mom - I'm a giver," she says. "I will give everything."