Facing baby's rare diagnosis, Georgia couple finds answers, hope online
MARIETTA, Ga. - Logan Arnold is a 7-year old smiler.
"He is the happiest kid that you'll ever meet," his mother Jackie Arnold says.
WATCH: Meet Little Logan and learn how his family is dealing with his rare disease
Jackie and Olin Arnold fell in love with their firstborn the second Logan came into the world.
But, as the weeks and months passed, both had a nagging feeling something wasn't quite right.
Logan had an elongated face, wide-set eyes, upturned earlobes, and features that , Jackie says, made him look like "an old man."
At 10 days, he stopped eating, and needed emergency surgery.
And he wasn't meeting his infant milestones.
So, Olin picked up his laptop.
"I literally Googled all the characteristics I saw: upturned ears, his eyes were wide-set, very happy disposition," he remembers.
He found 3 genetic syndromes.
"I started looking up pictures of the kids, and I found a little girl in Ireland that looked like his doppelganger," Arnold says.
The child, he says, looked like Logan's twin.
"So I started researching her particular condition, and I found out it was Mowat-Wilson syndrome."
If Olin was correct, Logan had a genetic syndrome so rare there are only about 300 known cases worldwide.
So, the Arnolds brought Logan to see an Emory geneticist for testing.
A blood draw confirmed Mowat-Wilson.
Now, the Arnolds needed a plan.
"Fortunately, we found some Facebook groups that have been a tremendous support," Jackie Arnold says. "We post a question and instantly we have 10 or 12 comments from people, who have actually walked the walk."
Many of the parents they found online had children older than Logan.
"You start figuring out what therapies to get him in," says Olin Arnold. "When did they start speech therapy, when did they stary physical therapy, and occupational therapy?"
Mowat-Wilson can cause moderate to severe intellectual disability.
Most children speak very little, if at all.
But Logan seems to understand what's being said.
"Even though he's not verbal, he's very expressive in his eyes, and the noises he makes," his father says.
Logan's grandfathers both help take care of him, helping Jackie, who recently gave birth to 3 and a half month old Lucy.
Finding the right doctors for Logan was more difficult.
"A lot of times, when we go to the doctor, we're the ones telling them about the syndrome," his mother says.
Dr. Jose Garza is Logan's pediatric gastroenterologist,
"He's a great kid," Dr. Garza says.
Garza is helping Logan with severe bowel issues, because Logan also has Hirschsprung disease, a painful intestinal disorder that affects more than half of people with Mowat-Wilson syndrome.
Many need surgery, and daily help with bowel movements.
"Surgery is life-saving," Dr. Garza says. "But that doesn't get them exempt afterwards of complications because of the illness itself."
It's a constant search for answers.
But Logan finds the good.
For two years, he's been playing baseball with Acworth's Horizon League, for children with special needs.
The next season begins in April, and Logan can't wait.
He doesn't just love the game, he loves his life.
"If you think about unconditional love, that's what you get from him, all the time, unconditional love," Jackie Arnold says.
The Arnolds have become involved in the Mowat-Wilson Syndrome Foundation, which just launched an online registry for parents of children with MWS. So far, about 50 people from 11 countries have shared their child's medical history to help doctors who treat children with the syndrome and support groups learn more about Mowat-Wilson. Below is a link to the organization.
LEARN MORE: mowat-wilson.org
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