September 7, 2022
Gilbert 6th grader Zack Langford fights for his life with a smile on his face
Zack Langford has one of those smiles that will instantly melt you. It’s more of a grin really, but it’s permanently plastered to his face. Even when the conversation moves to tough times – the scariest of times, actually – his facial expression never changes. His bright blue eyes never turn dark, his freckled face never furrows, and his immaculately styled hair never tussles.
As the Gilbert Middle School sixth grader sits on a chair at his family’s dining room table, surrounded by his parents, Troy and Amanda, younger brother, Zander, and full-of-energy shih-poo dog, Zazu, he’s not shy talking about his favorite activities since his life was turned upside down. He enjoys riding dirt bikes, fishing, drawing, and playing video games. It’s clear he’s not afraid to talk about his ailment either. He knows his story well going back to his initial symptoms in late 2018, and he’s quick to point out that during one less than pleasant trip to the hospital he was forced to give 27 vials of blood for testing purposes.
He’s been through a lot in his 11 years of life, particularly the last 3½ since his diagnosis, but he shrugs it off like most children would a poor score on a math quiz.
“It’s just kind of normal for me, it’s part of me now,” Zack says with his elbows leaning on the table. “I’ve kind of accepted it.”
IN THE BEGINNING
The worry in the eyes of Troy and Amanda is ever-present. How could it not be? They’ve already endured the worst kind of devastation parents can face – the loss of a child – when their first-born, a daughter named Mikayla, passed away at the age of six more than six years before Zack was born.
“Mikayla was born with two different brain abnormalities,” Amanda says. “She was only given a month to live, but lived six years. We waited 6½ years after she died to have Zack, and other than having asthma, he was a healthy kiddo.”
That all changed in December of 2018 though. Just four months after the family moved from their longtime home in Kansas City to central Iowa, Zack was diagnosed with restrictive cardiomyopathy, a condition in which the muscles of a heart’s ventricles stiffen and are unable to fill with blood. It’s the rarest form of cardiomyopathy, and it commonly leads to progressive heart failure and the need for heart transplant.
There were no symptoms prior to the family’s move to Iowa, and doctors still can’t give an answer to the family’s No. 1 question: Why? One day, Zack was a happy and healthy second-grade boy excited to go to a friend’s birthday party. The next day, the Langford family was staring at an unknown future.
“We went to a birthday party that day, but I was tired, I had no energy, and I didn’t feel the best,” Zack remembers. “We went to Target and Hobby Lobby, and in Hobby Lobby I got dizzy, nauseous, and had blurred vision.”
After a battery of tests at numerous hospitals – including an electrocardiogram, an echocardiogram, a cardiac catheterization, and an MRI, just to name a few – the family was given Zack’s diagnosis at the University of Iowa Hospitals.
And just like that, Zack’s world changed. He had to give up things like sports and riding his bike; his little heart just couldn’t handle them.
“It was hard emotionally at first,” Troy says. “One day you’re at the kids’ party in the gymnasium, and the next day you come home and can’t do anything. No baseball, no soccer, no riding bikes, no playing with friends.”
Initially, doctors told the Langfords that Zack would likely need a heart transplant within a year to survive. But aided by medication, his condition stabilized in the early months, something that is not normal in cases such as Zack’s.
“We were fortunate that we caught it,” Troy says. “Usually (at diagnosis, a patient) is in the hospital waiting for a transplant and they stay in the hospital waiting for a transplant.”
Eventually though, the disease took a toll. In March of 2021, Zack was placed onto the heart transplant list at the University of Iowa, and a year later, in March of this year, he was also placed on the transplant list at Children’s Mercy Hospital in Kansas City.
“Zack is the only child that has been dual-listed at Kansas City with another hospital,” Amanda says. “The fact that Children’s Mercy agreed to take on Zack was a blessing in itself.”
Even in these times of turmoil, Zack remains upbeat. He attends classes at Gilbert Middle School on a daily basis, and his positive outlook has an infectious quality to it that inspires everyone.
“Zack’s always upbeat and positive when he has every reason in the world to be upset,” Gilbert Middle School Principal Mike Danilson says. “His positive demeanor and outlook bring people together. It’s hard not to instantly like him and root for him.”
So now Zack, Amanda, Troy, Zander, and Zazu wait and hope. They wait for that call, which could come in at any moment, day or night, and they hope – and hope and hope – that Zack’s other organs aren’t taxed to the point that a transplant won’t be possible. Zack has had what he calls his “bug out bag” packed for a long time, and each night the family members go to bed wondering if a ring of the phone will jar them awake and change their lives yet again.
“At any moment, we could go,” Amanda says.
THE FINANCIAL BURDEN
Amanda and Troy are both originally from the Kansas City area. It’s where their primary support system still resides. And so they’ve asked themselves the question many times: Why aren’t we back there now?
“The biggest reason we haven’t moved is Gilbert Schools,” Troy says. “We were planning on moving back to Kansas City because that’s where a lot of our support is, and you want to be around family and friends. But the kids really liked the school here and made friends, and the school has been great. So we’ve changed our plans to keep the kids here in school.”
The financial burden caused by any medical crisis is immense, but a condition like Zack’s is extraordinary. All of the time off work to shuttle him to appointments in Iowa City and Kansas City, the myriad medications, the tests, the everything – it all adds up quickly.
“Nothing is cheap about being sick,” Troy says. “You try to save, but it goes out faster than it comes in.”
The Langford family recently began working with the Children’s Organ Transplant Association (COTA) in an effort to fundraise to help cover Zack’s medical expenses. As of Wednesday morning, the family had raised $7,758 with a goal of raising $75,000.
COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars to support transplant-ready children and young adults. Every penny in donation made to COTA in honor of a patient goes to pay transplant-related expenses.
To support Zack and the Langford family with a tax-deductible donation, you can visit his COTA website: COTAforHeartWarriorZack.com. Under the EVENTS tab on the website, you can also purchase a HEART WARRIOR ZACK wristband, the same wristband that loosely hangs on Zack’s right arm each day.
There is also a fundraising site – heartwarriorzack.itemorder.com – where T-shirts, sweatshirts, and hats can be ordered, all emblazoned with the Zack Heart Warrior logo that he originally drew himself before he handed it off to a friend to put the finishing touches on. Again, all of the funds raised from the sale of the merchandise will go toward Zack’s medical expenses.
Zack is excited about the possibility of a new heart. Not only will he get to wear what he calls “the cool pajamas” in the hospital, if all goes well he’ll eventually return to normal activities.
He’ll be able to run again. He’ll be able to play some sports again.
He’ll be able to be a kid again.
