He is a young man from Detroit Lakes, Minnesota about to undergo the smile surgery. Yet another young Moebius hero! Here's more:
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Four-year-old Ryan Larsen has never cracked a smile - not once, not ever.
The Detroit Lakes boy is a one-in-a-million kid who suffers from Moebius Syndrome. That means he is missing the two nerves in his head that make it possible to smile, frown, look peripherally and blink. It’s what gives us facial expressions.
Ryan has never been able to do any of that, but things are about to change. That smile that his parents know has always been in there is about to show its face.
“We’re headed to St. Louis sometime hopefully in June when he turns 5 to have ‘the smile surgery,’ or what they call the ‘facial re-animation surgery,’” said Nikki Larsen, Ryan’s mom.
Surgeons will take a piece of Ryan’s thigh muscle, along with its blood supply and nerve, and transfer it into the little boy’s cheek, connecting it to an existing nerve in there. After three to four months, that will grow, hooking everything together and giving Ryan the nerve to smile for the first time.
“It’s exciting to think about because as a parent, when you have an infant, you just wait for them to smile or to reach their milestones,” said Larsen. “And then it never happens.”
The surgery is is not new, and it is known to be very successful. In fact, it might even be a little too successful at first.
“It might look like he’s smiling all the time at first - like he’s wearing a mask,” said Larsen, who explains that Ryan will have to be trained how to work his new new nerves through mirror therapy. The same nerve that’s being plugged into also controls chewing.
“So he’ll have to be taught how to differentiate things in his mouth - how to make it smile and to chew and the swallowing process,” said Larson, who says Ryan will get one side of his cheek done first, then three to four months, later he’ll get the other side done.
Although Nikki and her husband, Jim, are excited to finally see an expression on their child’s face, it isn’t something they’ve been set on from day one.
“We were on the fence as to whether or not to make this decision for him because a lot of people wait until their child tells them they want it and makes that decision for themselves,” said Larsen. “But with him going into school we thought it would be better for him as he grows in school and in play and in social situations. We just thought it would be good.”
Since the condition affects Ryan’s facial expression, it also affects his speech. Larson says while he has a great memory and has a full range of language, it remains tough to always understand what he’s saying. The surgery will help with that, and this means one less struggle for Ryan.
Like roughly half of those with Moebius Syndrome, 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. Surgery on Ryan’s hand last year was not as effective as the Larsens had hoped, so they’re ready for a win this time.
Folks at the Detroit Lakes United Methodist Church are rallying around the Larsen family with a benefit to help offset the cost of travel.
“In all, it will probably be around 10 or so trips back and forth there (to St. Louis) for the surgeries and checkups,” said Larsen, who figures it will probably also mean being away from home and work for a total of a month.
The church is holding a spaghetti dinner on Sunday, Jan. 24, beginning at 11 a.m. There will also be a silent auction that goes from 11 a.m. to 2 p.m.
To donate to the silent auction or for more information, call 218-847-6030 or 218-841-0463. There is also a Facebook page set up with information at “Smiles for Ryan.”
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