The Johnson's Journey

By Eric K. Thomsen

It sounds like the beginning of a Free Will Baptist fairy tale: two preacher’s kids meet while working at Chick-fil-A in Smithfield, North Carolina, fall in love, and get married two years later. Maybe not a fairy tale, but close!

Four years later and the General Manager of another Chick-fil-A in Garner, North Carolina, Luke Johnson and his wife Amanda welcomed baby Brayden, a healthy, happy child. Another three years passed, and on January 24, 2010, five-pound, six-ounce Landen joined the Johnson’s story. Luke and Amanda were delighted to welcome another healthy baby. After a brief hospital stay, they took Landen home. Life was good.

As days and weeks stretched into months, however, the Johnsons began to be concerned about their new son. At Landen’s first appointment, his weight had dropped significantly. Doctors began to monitor his health closely. When he weighed only eight pounds at his six-month check-up, the Johnsons were referred to a geneticist at University of North Carolina Hospital. After extensive testing, the specialist shared five words that destroyed any fairy tale illusions Luke and Amanda might have held: “Your son has primordial dwarfism.”

Terrifying Diagnosis

Luke recalls the raw emotions of that moment. “We felt shock, then fear. We wondered, ‘What does this even mean?’ We had been to doctor after doctor, and they all told us that although he was small, he looked good, so we didn’t expect the diagnosis. Honestly, Amanda and I didn’t say much to each other the rest of the day. I clearly remember thinking to myself ‘I’m not reading my Bible tonight because I’m angry.’ The next few moments as I battled through those emotions I opened my Bible to where I left off the prior evening. I was amazed by God’s overwhelming presence as I read Isaiah 26:3-4: ‘Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the Lord forever: for in the Lord Jehovah is everlasting strength.’”

The words provided a divine reminder that God had everything under control. They brought hope and peace in the middle of that life-changing day.

The Johnsons immediately began learning all they could about primordial dwarfism (PD). The rarest type of dwarfism in the world, only 100 cases exist worldwide, with roughly 50 in the U.S. Only one in 4 million children are born with the condition. Landen could expect to grow to only three feet tall. Possible complications included bone and vascular problems, strokes, seizures, and aneurysms. The stark data was terrifying, but doctors also offered the couple encouragement, explaining that with advancement in research life expectancy is far greater than it used to be.

Because PD is such a rare condition, the few medical “experts” on the disease were all located at Alfred I. Dupont Hospital for Children in Wilmington, Delaware. “On a whim, we decided to give them a call,” Luke recalls. “It was obvious God was at work when we immediately spoke to the assistant of one of the doctors. After an hour of answering our questions, she told us the first available appointment was months away. She excused herself for a moment. When she returned to the call, she said, ‘We have a cancellation. Can you be here in two weeks?’ Of course, we enthusiastically agreed.”

Moving Forward in Faith

It was the beginning of Landen’s medical journey—a difficult passage the entire Johnson family would travel together. Landen began seemingly endless testing. DNA research soon revealed he was not at risk for vascular problems, which was a huge blessing. However, some two years later, a doctor in Scotland diagnosed Landen with DNA Ligase IV Deficiency. At the time only 11 cases had been documented worldwide. Today, there are 38. Ligase 4 is such a recently discovered condition that little is known about it, although it often causes the patient to become immune deficient. Amanda recalls, “When they told us Landen would eventually need a bone-marrow transplant, things got even more frightening. It was an emotional time.”

Immediately following his diagnosis, other than his size, Landen thrived. At age five and 20 pounds, he had a fully-developed, outgoing personality and a heart-melting smile for everyone he encountered. Luke and Amanda rejoiced over Landen’s every healthy moment.

In October 2016, though, while Luke was away preaching a revival, the Johnsons learned, as feared, that Landen’s immune system had begun to fail. He needed a transplant urgently. Without it, his prognosis was not good. “Those were difficult days,” Luke recalls about the anxious weeks spent waiting for a matching bone-marrow donor. “Yet, through each new challenge, my mind went back to those verses in Isaiah, and I was reminded again and again that the Lord is our strength.”

Other small reminders of God’s nearness arrived constantly through cards, conversations, and “chance” encounters. On the day we were told the blood marrow transplant needed to move forward, Amanda randomly turned to a page in the back of her devotional journal to take notes. The following Sunday morning, after I used Deuteronomy 31:8 in my sermon, Amanda showed me that “random” page—Deuteronomy 31:8. “And the LORD, he it is that doth go before thee; he will be with thee, he will not fail thee, neither forsake thee: fear not, neither be dismayed.” Amanda muses, “The Word of God is given so we have hope. I don’t know where we would have been without the Bible in this journey.”

After locating a matching bone marrow donor—a young male from Western Europe—and undergoing another barrage of tests, seven-year-old Landen began the transplant procedure May 25, 2017. Amanda recorded her thoughts just prior to the procedure in the family’s online journal, “We have so many questions, fears, and uncertainties. It is so scary, and we know it is going to be difficult. We also know God has a plan, and it’s a perfect plan. He makes no mistakes, and He will carry us through this. I’m praying my faith will be bigger than my fear, and that I will trust God every step of the way.”

Six long weeks in the hospital watching Landen struggle tested that trust—not only for Amanda but for the entire family. Chemotherapy left him worn, shaking, and exhausted. He was terrified on the morning of the transplant. And on day 26, Amanda woke to find Landen’s hair everywhere as the powerful drugs took full effect. The entire experience was excruciating. During this time, the Johnsons were often separated from Brayden and three-year-old Hannah Grace, Landen’s younger sister, who joined the family in August 2014.

It was 70 difficult days before Landen returned home the first time. And, though the transplant was regarded as successful, two years later, Landen continues to struggle with infections (primarily BKV), fatigue, and nausea from the powerful drugs he takes. Most recently, Landen has fought a fungal infection spreading towards his brain and a narrowing carotid artery that indicates, at some point, Landen had a stroke.

Luke reflects on the rough road the family has traveled together: “It has been a long, hard fight—hundreds of infusions, thousands of doses of medicines, 13-plus hospital admissions, countless tests and procedures, many days of pain, and long sleepless nights of running into Landen’s room to make sure he is okay.”

Amanda shares the practical challenges of PD: “Clothes are really tough. At nine years old, Landen wears toddler-sized clothes. On the bright side, skinny jeans fit well. It’s hard to find age appropriate things, and he really likes to get dressed up.”

Strength for the Journey

Yes, it’s been a long, tough road, but the Johnsons refuse to be defined by the Landen’s illness or the struggles they have endured. “First and foremost, we are a family committed to Christ,” Luke shares. “No, we’re not perfect. No, we don’t always have it together. We are not a tower of strength—we definitely are not. But God has given us strength. And we have learned to lean on him through this journey. When we pray, we tell God over and over, ‘We trust you.’”

Amanda chimes in, “We are a team—a great team—and we stick together.”

The Johnsons also have learned a great deal about people through their experience. “We have been overwhelmed at how much people care. And it touches us. Nearly 6,000 people from nine countries follow Landen on Facebook. They have gone past sympathy to empathy, actively helping us through our situation. They have gotten involved in our lives personally. We received a check for $2,000 from a lady in New Jersey we have never met in our lives. We have been reminded constantly there are many good people in this world who genuinely care.”

The Johnsons also have been amazed at the opportunities their journey has given them to share the gospel. Luke and Amanda made up their minds to take every chance to share their faith during Landen’s long hospital stay. The first week, Luke spread the word throughout the hospital that he would be in the family waiting room on Sunday for prayer and Bible study. Not a single person he invited came. “Only one man showed up,” Luke recalls with a smile. “He was a fellow believer; we shared and prayed together, then he took me to visit his daughter Callie, who was battling cancer.” Luke was able to pray with Callie and encourage her.

During a concert to benefit the transplant division of the hospital, Luke had an opportunity to preach a short sermon, and he will never forget the tremendous altar response. “Glenn Jackson, another young transplant patient led in prayer at the close of the benefit concert. He had received Christ not long before going into the hospital for his transplant. Glenn went home to be with the Lord in January 2018. His dad John began attending our church after Glenn’s passing, and God began dealing with his heart. While John was leading a hunt in the mountains of North Carolina, he gave his life to Jesus, and I had the privilege of baptizing him in the river where he and Glenn often went fishing.”

Landen also has become a bold witness for the Lord. Amanda recalls an interview with NBC-Charlotte and People magazine. “After the news crew got everything set up and ready to go, Landen looked at the reporter and said, ‘I have one question before we start. Are you a Christian?’ We weren’t really surprised, because that is Landen. He is a bold witness for the Lord. We are amazed and inspired by his courage.”

One day, after a flooring installer completed work in the Johnson home, Luke realized Landen was missing. Luke chuckles: “We looked outside and saw Landen standing in the seat of the man’s truck, holding the steering wheel, and talking earnestly to the installer. When I told him the gentleman had to go home, the installer replied, ‘Its okay; Landen has been telling me about the day he got saved and asked me if I had ever been saved.’”

Landen often approaches a complete stranger and asks, “Are you happy?” If the person replies no, he will immediately share his faith. “Our son has such a unique story,” Amanda concludes. “But the most important part of his story is his faith in Christ, and he will tell anyone about that!”

And Landen already knows what he wants to be when he grows up: a preacher “just like dad.” He doesn’t intend to pass up opportunities to share his young faith along the way.

What is the one thing the Johnsons want you to remember about their journey? “Through it all we have endured. Jesus has proven Himself and His Word true. We realize many families are enduring a difficult time in their lives. Whether financially, physically, or emotionally, life has become unraveled. We want you to know that no matter what you are experiencing, you can possess hope and peace through a relationship with Jesus Christ. Do you know Him as your personal Savior? If not, we encourage you to get to know him today.”

About the Writer: Eric K. Thomsen is managing editor of ONE Magazine. Contact him: eric@nafwb.org.

More About the Family (mostly the kids)

Work: Luke pastors Highland Drive FWB Church, Lincolnton, North Carolina

Big News! In a Facebook post dated March 27, Luke shared: “Meet Landen's newest baby brother, Tyler Levi. He weighs 7 lbs. 1 oz. and is 19.75 inches long. Mom and baby are doing great. God is so good!"

What do Mom and Dad enjoy as a family? We just enjoy being together. We have learned not to take our time together for granted. We love sports. We love going to a football game, basketball game. We enjoy playing games together, especially UNO. Friday nights are family night.

Favorite foods?

• Brayden – Steak

• Landen – Rice with salt and pepper

• Hannah – Nachos

Favorite TV Shows?

• Landen – Andy Griffith

• Hannah – Peppa Pig

• Brayden – McGyver

What do you want to be when you grow up?

• Landen – A preacher to tell people about the Lord

• Hannah – Work at the hospital and be a mom

• Brayden – Preacher or worship leader

What do you want other people to know about your family?

• Brayden – That we love God

• Hannah – That we follow God

• Landen – How special our family is

What is your dream vacation?

• Landen – The Holy Land

• Hannah – Disney World                  

• Brayden – California

Overheard when leaving the Johnson home:

Landen: “Can’t you ever be still?”

Hannah: “Nope! Never in my life.”

From the Family

Thank you for taking time to read our story. Find updates and current information on Landen on Facebook or by subscribing to our website: www.thejohnsonjourney.org