NC Boy Is 1 Of 11 In World With Rare Dwarfism

NC Boy Beating The Odds

LINCOLNTON, N.C. -- He is one of only 11 like him in the world; a local 7-year-old with a very rare condition now needs a life-saving treatment.

“My name is Landen Timothy Johnson.”

Seven-year-old Landen doesn’t miss much.

“Is he taking a picture of me?”

He is a handful.

“At my church, all the people say I'm cute and I really am.”

His mom Amanda explains, “He will be very small for his entire life and he will face many challenges, but we’ve learned with his personality there’s no limits at all.”

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Landen has a very rare type of what’s called primordial dwarfism. 

His dad, Luke, a pastor, says, “His particular type, there are 11 children in the world and three in our country.”

At 7, he is barely three-feet tall and likely won’t get much taller. His 2-year-old sister will soon surpass him.

“He’s come to me before and said, 'Daddy, I want to be big like you are,' and I explained to him, 'Landen, God made you just how he wanted you to be,' and I tell him, 'You’re big in daddy's eyes.'”

His condition comes with other challenges, though; his immune system is failing.

“It’s hard to think about it sometimes. We just take it one day at a time,” Amanda says.

Doctors say he needs a bone marrow transplant to survive.

“Just everything he’s gonna have to face. Just not knowing, the uncertainty.”

Landen knows what’s going on, “New immune system,” he says in his high-pitched voice.

So far, neither his brother or sister are a match; doctors will soon start searching the national registry.

His parents say Landen takes it in stride; his sole mission seems to be to make other people smile.

His mom says Landen offers a lesson for us all.

“We all have a purpose and there’s no limits to what we're capable of doing and seeing people for what’s on the inside and not what’s on the outside.”

His family is so grateful for the care they’ve been getting at Levine Children’s Hospital that they are hosting a fundraiser for the hospital. It will be in Lincolnton on May 19 at 7 at the New Vision Ministries. They’re hoping to raise more than $10,000 for the hospital.

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