7-Year-Old with Rare Form of Dwarfism Needs Lifesaving Transplant: 'People Say I'm Cute — and I Really Am!'
"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," Amanda Johnson tells PEOPLE
At 7 years old, Landen Johnson is just 3 feet tall and weighs just 24 pounds. But for a little guy, he has a huge personality.
“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,” his mother, Amanda Johnson, 31, tells PEOPLE.
Landen knows he’s a people magnet.
“At my church all the people say I’m cute — and I really am!” Landen says.
Landen, who is the size of a 3-year-old, has a rare type of primordial dwarfism called Ligase IV that also effects his immune system. He is one of just three children in the U.S. and 11 in the world with this condition.
“The doctors say he’s helping write the books, so there’s nothing we have to go by to know what to expect,” Amanda says.
Landen’s father, Luke Johnson, 33, is a pastor in Lincolnton, North Carolina, and remembers when Landen came to him last year, concerned about his size.
“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.’ “
Landen says, “I said, ‘Daddy, it doesn’t matter if I’m small or big.’ And he said, ‘Right!’ ”
“There have been a few times when kids have made fun of him and his brother does a good job sticking up for him,” Luke says. “But Landen sticks up for himself. He’s a strong-willed guy and he’ll let folks know if he doesn’t like something they say about him.”
But his size is not the only challenge he faces. Landen’s condition also means his immune system doesn’t work properly.
Dr. Niraj Patel is the Chief of Pediatric Infectious Disease and Immunology at Levine Children’s Hospital and is helping care for Landen.
“Oh my gosh, he’s a small person with a huge personality. He is fun to be around. He makes you laugh. He’s an adult in a kids body. He has a great way of dealing with his disease,” Dr. Patel tells PEOPLE.
After flu season, Dr. Patel will work with Landen’s family to help find him a donor for a bone marrow transplant.
“He is at a high risk for infections and bleeding. He needs this lifesaving procedure or he won’t live. It’s unlikely he’ll survive much longer without it,” Patel says.
Landen’s older brother and younger sister have already been ruled out as possible matches, so the family will likely be looking at the national donor registry for help.
Amanda struggles to talk about what lies ahead for her son.
“It’s hard to think about it sometimes — we just take it one day at a time,” she says.
The close-knit family focuses on their faith and Landen’s true love for people and his ability to make everyone around him smile.
“We all have a purpose and there’s no limits to what were capable of doing,” Amanda says. “[It’s about] seeing people for what’s on the inside and not what’s on the outside.”