Lexi Anderson looks like a typical 12-year-old kid. The sixth grader is full of life and so much spunk.
“How long have you been coming to World Dairy Expo,” I asked.
“12 years,” said Lexi.
Her entire life, she’s been traveling to World dairy Expo with her family to show cows. An annual trip that’s always packed with family fun. But Lexi’s life took a dramatic turn nearly 10 months ago, just two months after she showed during the 2023 World Dairy Expo.
“In December of 2023, she [Lexi] started feeling dizzy on the basketball court. And at first, we weren’t really sure what was going on, whether it was dehydration or what it was,” said Tamala Anderson, who is Lexi’s mom.
Unsure how serious it was, it wasn’t until Lexi blacked out on the court that they knew something wasn’t right.
“They decided to bring me in to the doctor. And then we figured out that I had this heart problem,” Lexi said.
The Diagnosis
It wasn’t just a minor problem. The diagnosis? Restrictive cardiomyopathy (RCM).
“It’s a hardening of the heart, the lining of the heart. So, the walls of the heart are eventually going to harden and stop pumping” Tamala explained.
“It’s really rare,” Lexi said. “Only like 2% of the world has it.”
Restrictive cardiomyopathy is a less common type of cardiomyopathy. According to the Pediatric Cardiomyopathy Registry, the average age of diagnosis is 5 to 6 years.
Lexi’s diagnosis meant her only cure would be a heart transplant
“When we first got the news, it was extremely hard to get that news,” said Tamala. “To hear that your daughter…. sometimes kids only have a year and a half after they’re diagnosed with this. It’s such a hard thing to hear that your daughter could die,” she said.
A heartbreaking diagnosis that shocked the family, but Tamala says they were sent to specialists at the children’s hospital in Milwaukee and got connected with an amazing team of doctors that immediately planted seeds of hope.
“We’ve got a great team. They don’t even let us look at the negative. They told us that we didn’t need to worry about it. They said they we’re going to find it [a heart] and fix it,” Tamala said.
Her New Normal
At 12 years old, Lexi’s life quickly turned to anything but normal. She has doctor visits at least every six weeks with strict orders to cut out physical activity that could stress her heart.
“I got banned from playing all sports, to stop it from growing,” Lexi said.
Lexi was extremely active before, playing basketball, riding horses and playing softball, which she says is her favorite sport.
“I really miss playing softball,” said Lexi.
“It’s hard,” said Tamala. “I kind of do have her wrapped up in a bubble as she has strict orders at school. All of her teachers know the strict orders. She’s not allowed to run, and she’s not allowed to do any of that stuff that might affect her. So she’s kind of limited in every aspect.”
Helpless in so many ways, Tamela did the only thing she could and that was to protect her little girl, all while waiting on the call that could save her life.
“Her timeline went from living 60 years, 80 years, down to we don’t know what,” said Tamala. “We could get a phone call at any time.”
Waiting on the Life-Saving Call
It’s that phone call that Tamala, Lexi and her entire family are anxiously awaiting.
“Honestly, my bags are packed in the car,” said Tamala. “I’ve got Lexi’s bags packed in the car. We’re waiting, and we’re ready.”
“Are you scared at all or are you nervous at all,” I asked Lexi.
“I’m a little nervous. I don’t know when I’m going to be able to get back home. And I don’t know if they’re going to hold me for the three months recovery, but hopefully they let me go home and just recover at my house.”
Love for Lexi
At 12 years old, Lexi’s courage is contagious and her support is inspiring. She has an army of family and friends who are rooting her on, with a group called “Love for Lexi.”
“A couple of her friends at home decided to do a website, it’s called Love for Lexi, where we have Caring Bridge connected,” said Tamala “Some of it’s to raise money. Some of it’s just to let people know how she’s doing.”
That love was put on center stage this summer, when Lexi’s friends Hattie and Holly Hargrave gave the ultimate gift of generosity with a lamb for Lexi.
“We went to a county fair, and I was showing sheep, and I didn’t make the sale, and one of my friends did and that raised over $27,000 and she gave it to me for the benefit,” said Lexi.
“It was amazing,” Tama said. “It was absolutely amazing. Honestly, the first buyer, when the first buyer bought the lamb, I was in tears . Then, he’s like, ‘Nope, I want to sell it again.’ And he so he gave it back and they sold it again. And I mean, it sold four times.
That sale raised $27,000 from four business who all came together to show Lexi love and support.
“We live in a really, really great community,” Tamala said.
“I feel really, really loved,” said Lexi.
Lexi looks happy and normal, but as her heart works in overdrive, the reality is Lexi’s body is tired and worn down.
“Some days it takes her breath away just to walk across the parking lot. Some days she is jumping around saying, ‘I’m ready to go,’” Tamala said.
Success at World Dairy Expo
This week during the World Dairy Expo in Madison, Wisc, Lexi was determined to go in the ring, and she brought home hardware, as well as memories she won’t forget. One of the best memories was when her cousin won Junior Champion of the World Dairy Expo Junior Show.
“I was super happy, because it’s like a victory for the farm,” said Lexi. “We just cheered each other on and we started supporting each other and stuff.”
That’s who Lexi is; a spirited kid who’s always supporting those around her.
“She’s a great kid, honestly,” said Tamala. “She’s got such a big heart. If she sees someone down or if she sees someone even getting bullied, she’s more of a protector. So she’s just a great kid.”
Lexi’s big heart is now what’s needing saved, but it’s a constant showing of love and support that’s getting this family through.
