Connecting The Dots & Beaming with zest for life

Story by Sadie Fowler

Walking into the home of the Beam household is the typical scenario of any busy American family. Dad is working on business from his office upstairs, son is tossing around a foam football as he awaits baseball practice, and sister is razzing brother a bit — all while waiting for mom to direct them on what happens next.

Organized chaos? Perhaps, but it all seems to come together in perfect harmony thanks to the family’s matriarch, Kelli Beam— the connector of dots.

“I call myself ‘the dot’ and, in Rutherford County, it’s still about that,’” said Kelli. “Here, it’s about who you know, and handshakes still matter. People still want to know other people. This community is growing for that very reason.”

Kelli, known equally for her role as the Rutherford County Chamber’s vice president of membership development, is also the connector of dots within her family. She performs both tasks well and seemingly with comfort, perspective and appreciation — feelings that are reciprocated by those on the receiving end of the benefits.

In addition to her day job, Kelli is also known for the tenacious supporting role she plays as mother to 9-year-old superstar Carlee Beam, Rutherford County’s fighting face of Spinal Muscular Atrophy (SMA), a genetic muscular disorder that led to Carlee being Tennessee’s first recipient of Spinraza, an innovative — and very expensive — treatment aimed to improve her quality of life. Spinraza was approved in December of 2016 and Carlee received her first treatment March 29, 2017.

“SMA was discovered more than 30 years ago and they have just now have come up with this treatment,” said Kelli, explaining the procedure involves removing 5 ml of spinal fluid and injecting the Spinraza into her spine. Now in the maintenance phase, Carlee needs treatments every four months at $125,000 a treatment.

“We reached out to our connections in the community and they did their due diligence to help make this happen,” Kelli said. “As soon as we learned about the treatment we were on it. I wasn’t going to wait. We were the first ones in Tennessee to receive it.

“Our hope is this will give her some strength back, even if it’s just to hold my hand a little tighter,” Kelli said. “That’s a blessing. With SMA, your muscles don’t get toned the way ours do if we work them out. We’re trying to fire some of her muscles back up ... All my goal has ever been is for her to live the most independent life she can with this disorder. Whatever that needs to look like is what we’re trying to do.”

Kelli is chipper and confident as she describes her journey toward leadership in Rutherford County. When the conversation turns to Carlee, Kelli’s tone changes as she speaks in a softer and quieter voice, reflecting on a scary and emotional journey that has taught her about life’s grandest blessings.

“I don’t know where I’d be if I didn’t have her,” Kelli said. “She’s pretty special and I’m one lucky mama. She’s taught me so much … I don’t know where Jason and I would be if I didn’t have her. I’d be so selfish, and Jason and I would not be on this level of humbleness if we didn’t have Carlee the way she is. It’s not about me.

“I have something bigger that I get the honor of serving every day and I think about that all the time. I could be on the beach driving some swanky car but I’m thankful for God providing me with the ‘Swagger Wagon’ van as a vehicle for Carlee because not everyone has that opportunity. We have been blessed.”

The blessings are obvious to Kelli, but she still shakes her head in thankful disbelief as she laughs when answering the simple question of how she does it all.

“I pray a lot,” she said. “And I have an amazing support system. That’s how we get by. And, even though it may not seem like it, I’m constantly planning things in my mind. I’m often late, but I’m always planning and thinking about what’s next.”

Kelli and her husband Jason moved to Rutherford County in 2004 and she was quick to jump into the community by joining the Chamber through the company for which she worked at the time.

“We knew no one, I mean no one,” she said. “We got here, found our house and a church, Fellowship Bible, and I said, ‘I have got to start meeting people so I joined the Chamber under the insurance company I was with.’”

Not too long after, Kelli had a job change and became even more involved with the community. Ironically, that job went away. The very next day she walked into an event and Ann Henslee, who was in the role Kelli currently holds at the Chamber, told her not to worry.

“She said, ‘I’ve got something for you,’” Kelli said. “She knew I was involved and knew my personality. That was 10 years ago so it just goes to show if you put yourself into something you’ll be blessed.”

The day Kelli started at the Chamber she was helping out at the organization’s golf tournament and went home during lunch to change her clothes. She collapsed as a result of a gall bladder attack. Ironically she was off work then for two weeks.

“No lie,” she laughed. “I was out two weeks then came back on my birthday. It was all good and then I found out I was pregnant … I didn’t think I could get pregnant so the gall bladder incident was pretty significant.”

She worked through her pregnancy and, in 2008, she left to go on maternity leave for her second child. The day she left, Henslee, the one who recruited her as a membership account executive in the beginning, had resigned and her last day was on that same day. Despite the initial bumps, Kelli was asked by Stephanie Brackman — VP of Operations, to move up the ladder and fill Henslee’s role in the director’s position.

“(Stephanie) said, ‘you don’t want anybody else to tell you how to do your job do you?’” said Kelli. “She knew how to get to me and knew I would not turn it down with that question.”

She took the promotion, and stayed the course, becoming a mom of two. Drew, now 14 and a standout athlete at Blackman, was five at the time; and she also now had her sweet newborn daughter, Carlee. Her husband travels a lot for work so the family became instant pros at the divide and conquer mentality, with Kelli becoming a master juggler.

When Carlee was about a year old, Kelli said she and Jason began noticing she wasn’t doing quite the same things Drew had done at the same age.

“As a parent you hate to compare, and she was such a good baby, but she wasn’t doing all the same things, like pulling up the way Drew did,” Kelli said. “I knew something was going on but I just didn’t know what.”

Kelli said it’s interesting to look back at her journaling during that time. All she wanted was answers. She pushed for tests to find out what was wrong. At first she was told Carlee was just developmentally delayed.

“I said ‘no way,’” she said, explaining she knew it was more. She pushed for more tests and eventually the diagnosis of SMA Type II was revealed. It didn’t sound good. In fact, it rocked Kelli and Jason’s world.

“She was a little over two when we got the news,” Kelli said. “They said she has SMA and I said, ‘what’s that?’ I remember that day … The first thing we did was google it and needless to say I was distraught.”

Kelli read things she could not comprehend. Suddenly, prayers for simple and direct answers became prayers for her daughter’s life as the prognosis seemed like a bad dream from which she couldn’t escape.

“I was angry, and struggled with anger for a long time,” she said. She snapped out of it and said she and Jason chose “not death but life” for their sweet Carlee. “We chose to do everything possible to make sure she lived instead of tucking her life away.”

Carlee never stood on her own, but she adjusted and has lived a happy and normal life. Always wearing a big smile, Carlee enjoys all the normal things little girls do, hanging with friends, pool time, sleepovers, baking cookies, and even cheering her brother on as he plays baseball.

“The best thing about being nine is I get all the attention,” said Carlee. “The worst thing about being nine is my brother is older and gets to have more friends over.”

She got her first wheelchair at age two-and-a-half, another one when she was about five, and her latest version — an electric power chair — three years ago around Christmas. Other than the wheelchair, it’s hard to point out anything out of the ordinary when chatting with the popular face of Murfreesboro.

“She is truly a confident and sassy girl,” laughed Kelli. “I don’t know where she gets that from but she’s one sassy personality. She walks into a room and she’s just different, and stands out, but not in a bad way. People just love her, are accepting of her, and want to know who she is because she’s a very engaging person. She walks into a room and people turn their heads. Sometimes it’s because of the wheelchair but a lot of the time it’s just because it’s Carlee.”

The family, with support from the community that continues to grow, has raised money for the Cure SMA organization through many activities and events, most notably Carlee’s Big Shoot Out, which has been held three times and raised more than $150,000. They continue to raise money for the Muscular Dystrophy Association where Carlee is a Tennessee Ambassador.

Organizing events like this, in addition to her role at the Chamber and simply being a mom keep Kelli busy. She’s involved in lots of things, including being a board member of Project One Four, the David Price Foundation, which is behind the opening of Murfreesboro’s Miracle Field. On the flip side, this keeps Kelli more refrained than some might realize.

“I do a lot and go to random events at random times, but the kids come first and watching them in their sports or watching Carlee at Miracle Field are the highlights of my days. I’m not the mover and shaker in terms of being able to go to certain events, like the Heart Ball for instance, which I miss every year because it falls on Carlee’s birthday.” And she’s perfectly okay with that.

Kelli summed it up best by explaining how much Carlee and their journey together has changed her entire perspective on life. Sure, watching other little girls do things Carlee physically can’t do is tough, but the rewards of the viewpoint on life she’s been granted as a result far outweigh those challenges.

“I have to thank God for allowing us to see things in a different way,” she said. “Our perspective is different. Yes, it’s hard on my heart because I’d like to see her be able to dance or cheer like other girls, or walk up steps, for instance. But what if — what if — the ramp really gives you a different view than the steps?”

Thanks to the support of the community and the availability of the Spinraza treatment, the future is looking bright for Carlee. Kelli and Jason will continue to do what it takes to allow her to live the best life she can, just like any normal and loving parents would do.

“She wants to go to college, teach, bake, be a mom, and the Lord will help us,” Kelli said. “Those are her desires and I want to help make that happen … She wants to fall in love. She wants someone to love her for who she is. It will be interesting to see how all this looks as Carlee gets older.

“She’s a pretty special girl,” Kelli said. “She’s Carlee.”