Benefit to be held for local boy born with rare disorder

CHARLOTTE, N.C. — One little boy at Levine Children's Hospital is coping with something only about a dozen people in the world experience.

Landen Johnson was born with primordial dwarfism.

Landen’s parents noticed soon after he was born that his development was delayed.

“We had to go in every week for weight checks. He looked healthy but otherwise wasn't growing,” Landen’s father, Luke Johnson, said.

By the time he was 6 months old, doctors gave him a diagnosis that few have ever heard of.

“Primordial dwarfism is extremely rare. There are only a couple of children with primordial dwarfism in the world,” Dr. Niraj Patel said.

[PRAYING FOR LANDEN: Click here to visit Landen's Facebook page]

Ongoing treatments boost Landen's immune system, but now a planned bone marrow transplant will help his body fight off disease.

Landen, now age 7, faces all of it with strength and faith.

“I looked at him and said ‘How are you so brave?’ and he said, ‘God is helping me.’ And that's the type of boy he is. It’s not that he's just different physically, smaller, but he is a courageous little guy,” Luke Johnson said.

[LINK: Read more about Landen's journey]

His family is so touched by the care that he's received.

His parents have planned a benefit concert to raise money.

“We want to give back and so the goal for the fundraiser is to raise $10,000 for the Levine Hospital bone marrow transplant unit,” Luke Johnson said.

They encourage everyone to do something.

“Our little boy is going to live because somebody gave to him, so be a donor,” Luke Johnson said.

Landen is scheduled to have his life-saving bone marrow transplant next week.

The benefit concert is May 19 from 5 to 7 p.m.

[MORE: Benefit concert to raise money for the Levine Children’s Hospital] 

There will be a bone marrow drive so that people can join the registry.

Cox Media Group