A cruel twist of fate

CUMBERLAND, Wis. — Imagine that one minute, you are sitting in the stands, cheering on your 11-year-old daughter’s basketball team. The next, you are in a doctor’s office hearing the unthinkable — your daughter requires a heart transplant.

That is the nightmare that Jamie and Tamala Anderson and their daughter, Lexi, are living.

Tamala’s parents, Roger and Darice Riebe, operate Meadow-Ridge Jerseys in Cumberland, where they milk 100 registered Jerseys with their sons, Mike and Mark. Although Tamala and Jamie are not directly involved with the day-to-day operations of the farm, they have raised their daughters as a part of the family farm. Lexi has grown up showing Jerseys alongside her sisters and her cousins.

“It started last fall,” Tamala Anderson said. “I honestly thought she didn’t want to play. She would run halfway up the court and stop like she was out of breath. I told her if she didn’t want to play, that was fine — just tell me. She told me that she couldn’t see, which was why she was stopping.”

Thinking that what Lexi was experiencing was perhaps dehydration, the Andersons spoke to her coach and devised a plan for Lexi to leave the game if needed.

“During a game last November, she almost passed out,” Anderson said. “We realized something was not right and scheduled an appointment with our primary care physician.”

At that appointment, an electrocardiogram showed what was described as a discrepancy between the top and bottom halves of Lexi’s heart. An appointment was scheduled for Dec. 15, 2023, with a specialist at Marshfield Medical Center. There the Andersons received the unthinkable news.

“After doing blood work and an echo, the doctor came back in and asked to speak to us privately,” Anderson said. “He told us that he didn’t even know how to break it to us that Lexi had restrictive cardiomyopathy.”

The specialist explained to the Andersons that essentially the muscles in her heart were hardening and, eventually, it would become a solid block and stop pumping. Furthermore, he told the couple there are no drugs and no treatments for the disease outside of a heart transplant. The Andersons were referred to the hospital Children’s Wisconsin in Milwaukee.

“The specialist told us it is so rare, he has never seen a case in his career or treated it,” Anderson said. “He said less than 2%-5% of cardiomyopathy patients develop restrictive, and they are usually adults.”

Lexi’s cardiomyopathy has a genetic component, but doctors do not know how she developed restrictive.

“Normally restrictive comes from something like chemotherapy or having too much iron or protein build-up in the heart,” Anderson said. “Lexi’s tests show the right amount of protein and iron. We literally drew the short straw in the lottery with this.”

The disease has progressed rapidly. Lexi must be within six hours of the Milwaukee hospital at all times, in the event a heart becomes available.
The Andersons have been told to prepare for Lexi to be admitted to the hospital at their next visit Oct. 7, where another heart catheterization will be performed.

“She’s been getting sick at nights; the weather has been hard on her,” Anderson said. “She can’t eat full meals because she gets sick, she has to eat lots of small meals. They are concerned about her weight dropping. That can mean the heart failure is progressing faster.”

Despite the gravity of her situation, the Andersons are trying to figure out how to walk the thin line between protecting their daughter and allowing her to be a kid. Plans are for Lexi to start sixth grade this fall, like normal.

“Not being able to play sports or take part in gym is driving her insane,” Anderson said.

Lexi was able to take part in showing both dairy and sheep at the Barron County Fair last month. Her cousins were on standby to take over in the show ring if the exertion became too much. The Andersons hope Lexi can show in the open show at the Minnesota State Fair and World Dairy Expo, with the same precautions.

When Lexi’s market lamb failed to make the fair’s livestock auction, fellow Barron County 4-H student Holly Hargrave stepped up, donating the proceeds from her lamb to her friend. The lamb sold for more than $27,000. To raise that amount, it was sold four times, first to J&A Northwest Construction who donated it back, and then to three others who did the same: local dairyman Bob Lentz, Two Rivers Accounting LLC and local veterinarian Dr. Don Peterson.

Friends and family of the Andersons are planning a benefit to raise money to help cover the medical bills the family will face in their fight to restore Lexi’s health. The benefit will be held Sept. 8 at the Cumberland Middle School and will feature raffles, food and live music. A benefit account has been established through Cumberland Federal Bank.

Meanwhile, Lexi is listed as 1B on the transplant list and will move to a 1A status when she is admitted to the hospital.

“She is O-positive, so it has to be an O blood-type heart, and, because of her size, it has to be a heart from a child aged 5-10,” Anderson said. “One day she asked me who would just give her their heart. We had to have the talk about how a heart would become available.”

That talk hit close to home for both Lexi and her mother. Lexi’s older sister, Emma, was killed in an all-terrain vehicle accident Aug. 27, 2020.

“She asked me if Emma’s heart had been donated,” Anderson said. “I told her we had allowed them to take whatever organs could be used to save another child.”

While Anderson has had to be strong in the face of everything Lexi is up against, inside she is struggling, she said. Anderson was emotional as she talked about what she is facing.

“Honestly, I pray to God every day — you already needed to take one of my kids, please don’t take another because I won’t be able to handle that,” Anderson said. “I have to be strong right now, but if something happens ... I have to believe it won’t. They said they are going to find something for Lexi. They never have not found anything.”