All smiles -- on the inside
Little 19-month-old Ryan Larsen thinks he's a funny man.
"He is funny," said his mom, Nikki, "he's like a class clown goofball ... he makes us laugh."
He makes himself laugh, too, as he tots around exploring the rural Detroit Lakes home that he clearly owns.
But as his eyes shine with the mischief and energy that a good, fat afternoon nap provides, there is one thing missing -- his smile.
Ryan was born with Moebius Syndrome, which tends to need explanation for most, as its rarity only touches two out of every one million babies.
"You're born with 12 cranial nerves," explained Nikki, "and Moebius affects the 6th and 7th nerve." Those happen to be the exact nerves that tell a person to blink and smile.
"So he cannot look peripherally; he doesn't blink and has no facial expression," said Nikki, adding that it's a syndrome he will not grow out of.
And like about half of those who suffer from Mobius, little Ryan also has Poland Syndrome, which affects the left side of his body with low muscle mass and a cleft hand. On his left hand, Ryan only has a thumb and a pinkie, meaning he is always giving the Hawaiian shaka sign of Aloha. It seems to fit him because this kid is ready to party.
"He's just such a joy," said Nikki, as her and her husband, James Larsen, watched impressed as their son puts a little puzzle together and zooms his toy tractor a little further than he planned. "Uh-oh," said Ryan, popping up to get it and falling three times before he did. He just started walking, which means the Larsens can concentrate on the next, big goal.
"Speech is a concern right now because the nerves around his lips are not there, so to get him to speak properly and for people to understand him is my biggest worry right now," said Nikki, who says without facial expressions or words, there are times when even she can't immediately tell what her little boy is feeling.
"There's a fine line between crying and laughing," she said, "sometimes you just have to wait a minute for it to escalate to find out." But usually, Nikki says, it only takes looking into Ryan's eyes to see what's up.
"You can tell when he's laughing because his eyes just light up," she said, adding that the toddler tantrums are also easy to detect.
"There's a lot of body language," she laughed, "so even though the expressions aren't there, you can tell."
Ryan still makes time every six months for his specialized doctor visits at the Mayo Clinic and his physical and speech therapies weekly and bi-weekly. And while he seems to be hitting his milestones, there is that undercurrent of worry for his parents.
"I worry that people are going to perceive him as the odd kid, and I think about what to do to prevent that," said Nikki, "and I think the more people that hear about it in our community, the more acceptance there will be down the road."
But this mother doesn't just want to people to understand Moebius, she wants them to understand all differences.
"Because we're all different," she said, "whether it's Moebius or any of the other things out there, and so more than anything I just want him to grow up understanding that yeah, he's different, but so what?"
And while James has also had his share of worries as a father, he says attending a Moebius conference in Philadelphia last summer eased some of those concerns.
"We met one guy (with Moebius) that was a professor and just all these people who have this and are succeeding ... that was good," he said.
And as they watch the personality start to poke out of their little ball of energy, they are reassured that Moebius is no match for Ryan Larsen.
"He is an upside," said Nikki, who says she no longer sees Ryan's difference as a bad thing, and hopes the community can embrace it the same way.
"The people at my church are so great about it, always asking about him," she said, adding that a new online community of friends also help her. With a rare syndrome like this, there might not many in the Moebius support groups, but it's enough to make some noise.
January 24 is Moebius Syndrome Awareness Day, and Nikki is hoping the big day of recognition is also recognized in her smaller community.
"Purple is the color for it, and so I would just love to see people wearing purple that day for Ryan," she said, knowing her fight for awareness and understanding will go far beyond one day. But that's alright because in the meantime, she's got her little funny man.
"He makes us smile and laugh every day," she said, "every single day."