Foundation helps family channel grief through giving

Luke and Landen Johnson embrace during a celebration of Landen’s life at their church in 2018. /File photo

LINCOLNTON – A life lost too soon has become a beacon of hope for many families battling the unknowns of a rare disease. 

Landen Johnson battled DNA ligase IV deficiency, a rare disorder affecting one in four million people that results in primordial dwarfism and immune deficiency. The disorder ultimately cost Landen his life in September 2019 after complications from a 2017 bone marrow transplant led to multiple organ failure. 

“Landen was a giver,” said his father Luke Johnson, pastor of Highland Drive Free Will Baptist Church in Lincolnton. “After he passed I received a letter from a lady from Fuquay-Varina who followed Landen’s story. I had never met her personally, but in her letter she wrote how Landen had impacted her life and suggested that we start a foundation.” 

Landen Johnson spent a day as an honorary detective with the Lincoln County Sheriff’s Office in 2019. /File photo

That’s exactly what Luke and his wife, Amanda, did to honor their son. Less than a year after his death, the Landen’s Story Foundation was formed in the summer of 2020 to give encouragement and hope to children and their families enduring the most difficult time of their lives. 

“Our primary objective is to be a help to families who have a child with a rare diagnosis,” Johnson said. “Landen had a very rare illness, so that’s where our heart is at to help families who have kids like Landen who don’t have the same resources as other kids with more common disorders.” 

The foundation doesn’t limit its outreach to those battling the same illness that affected Landen. Instead, its board of directors distributes funding based on referrals through the Levine Children’s Hospital, as well as working with local families referred by word-of-mouth. 

“One thing we hate doing is telling a family ‘no,’” Johnson said. “We’re quick to figure out a way to help someone rather than turning them away.”

The nonprofit continues to assist families throughout the grieving process after they lose a child.

“Once your child passes, and it’s not intentional on the part of the hospital, but it’s almost like you’re cut off instantly,” Johnson said. “You’re used to being at the hospital or clinic almost daily, and then all of a sudden your child passes away and it’s like parents are left to kind of figure things out on their own.”

In addition to covering funeral costs and helping families afford counseling after the fact, faith is also a big part of the grieving process.

“We’re a family of faith and if it were not for our relationship with Christ I’m not sure what we’d do,” Johnson said. “That’s where our strength and our hope comes from so we do our best to not be pushy but just to be an example for other families.”

The foundation hit the ground running, distributing nearly $20,000 to families in need just in the first year of operation. From paying for chemotherapy treatments to assisting a family with its mortgage, the nonprofit is there to help fill the gaps where needed.

For the Johnsons, giving back has played a pivotal role in easing their own grieving process. 

“Of course, we’re still going through the process of learning how to move forward in grief,” he said. “To be authentic, it’s been the hardest thing we’ve ever dealt with in our lives. We still have moments where we hurt and we cry because we miss that little fella every single day. There’s been no better way for us to grieve than by being a help and providing comfort for other people.”

The Landen’s Story Foundation has been remarkably successful considering the constraint on fundraising events caused by the pandemic. While outside groups have raised money on behalf of the nonprofit, the foundation will host its very first fundraising event Saturday, April 2, from 10 a.m. to 2 p.m. at New Vision Ministries in Lincolnton. 

The Landen’s Story Family Fun Fest will feature bounce houses and face painting for the kids, plus a craft fair and barbecue chicken plates for $12. The event will double as a blood drive and attendees can also register for a cheek swab to donate bone marrow. 

Potential vendors should email while donations can be made by visiting

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