North Carolina Kids with Same Rare Form of Dwarfism Meet for the First Time: ‘They Had This Connection’

Kristie Winoker couldn’t believe it when she read a recent PEOPLE story about Landen Johnson, a 7-year-old boy with an extremely rare form of dwarfism.

Kristie’s 4-year-old daughter, Sophie Winoker, has Ligase IV, a rare form of dwarfism causing complications with the immune system. So does Landen.

“We were so shocked! All this time we’ve been trying to find other kids like Sophie and to find one so close was just amazing,” she tells PEOPLE.

When PEOPLE first profiled Landen in March, his parents were under the impression he was one of only three cases in the country, only 12 in the world. Sophie makes the fourth known case in the U.S.

“Doctors always told us it was so rare they had never even seen cases before,” Landen’s dad, Luke Johnson, tells PEOPLE.

Kristie remembers reading the story and immediately she and her husband started desperately searching to find Landen and his family.

“We Googled, we looked through Facebook and I think both of us sent them messages in every way we could, and within 24 hours we connected,” the stay-at-home mother of four says.

Incredibly, the two families live just 45 minutes apart in North Carolina.

“We just kept saying, ‘Can you believe this?’ ” she says.

The families arranged to meet up as soon as possible. They picked a fast food restaurant halfway between them and this past Saturday, the families spent three hours in awe of what they had discovered.

“They look so much alike, they look like brother and sister,” Kristie says of the two new friends.

Luke adds, “It’s amazing how much she looks like Landen.”

Landen and Sophie, along with both of their siblings, all played together.

The two kids immediately connected.

“With Sophie, she’s still so young that I don’t think she has any idea that she’s different from most kids, but when she met Landen, they had this connection. They took to each other and it was really special – they just knew,” Kristie tells PEOPLE.

The parents say they’ve benefitted too – swapping notes on a disease so rare, doctors say the kids are literally writing the book on what’s to come.

“It was really great to have another parent that can understand and has gone through a lot of the same things we have. Just to be able to talk to them…it’s so unique,” Kristie says.

The families already have plans to get together again.

“Definitely, in the next few weeks! We are so, so happy to have found them,” she adds.

from PEOPLE.com http://people.com/human-interest/north-carolina-kids-rare-form-dwarfism-meet/

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