A Georgia Family Used Google To Diagnose Their Baby’s Rare Genetic Disorder

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Olin and Jackie Arnold are a happily married couple from Marietta, Georgia. The pair went on to start a family and now have two children together. They are seven-year-old Logan, and Lucy, a four-month-old girl.

Naturally, the Arnolds were overjoyed when their first child Logan was born. And he was a very smiley baby, too. But while that cheeriness is something that would usually delight most parents, the couple were concerned that there was actually something a bit different about their son.

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Until this point, everything had been going well since they brought Logan home from hospital. But their little baby had certain unusual facial features that worried them. Somehow, his face didn’t look quite as it should.

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Indeed, Logan’s parents noticed that he had a slightly elongated face. He also had strangely shaped ears, and his eyes seemed a little further apart than is usual. But what did all this mean?

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Naturally, the couple were concerned. In fact, in February 2017 mom Jackie told Fox 5 Atlanta that Logan’s features made him look like “an old man.” But then again, they weren’t sure if there was actually anything wrong with the baby.

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Sadly, though, things took a turn for the worse when Logan was just ten days old. For no apparent reason, he suddenly stopped eating. And the sickly newborn was duly rushed to the emergency room, where he underwent an operation.

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However, things weren’t plain sailing from then on, either: following the surgery, Logan still wasn’t developing as quickly as other babies. But no one could explain why. So his father, Olin, decided to do some research himself.

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In particular, he took to the internet, typing in some of Logan’s physical features into search engines. Thereafter, he discovered that there were other parents with children showing similar characteristics to Logan. And, as a consequence, the worried dad was able to narrow Logan’s condition down to three possible syndromes.

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Olin then stumbled across a photograph of a girl living in Ireland. Talking to Fox 5 Atlanta, he described it as looking at Logan’s “doppelgänger.” Indeed, the two shared many of the same facial features. And he knew then that whatever syndrome this little girl had, Logan probably had the same one.

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That little girl had Mowat-Wilson syndrome, a rare genetic condition. It’s so rare, in fact, that it’s thought there are only about 300 reported cases in the whole world. Having facial features like Logan’s turns out to be one of the major tell-tale signs that a person has Mowat-Wilson.

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Unfortunately, the symptoms don’t only affect the person’s appearance; those living with Mowat-Wilson disease also tend to develop later and have some degree of intellectual disability. And more than half of those affected also have Hirschsprung’s disease, a painful intestinal disorder.

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By this point, the Georgia couple had finally worked out what was wrong with their little boy. And, eventually, Logan was officially diagnosed with both Mowat-Wilson syndrome and Hirschsprung’s. This meant that he had to regularly visit a pediatric gastroenterologist.

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Meanwhile, Logan’s parents have since turned to Facebook for extra support from other parents with children living with Mowat-Wilson. And the couple have even had to educate medical professionals about the condition. As Jackie told Fox 5 Atlanta, because of its rarity, “A lot of times, when we go to the doctor, we’re the ones telling them about the syndrome.”

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Luckily for the Arnolds, some of the parents they connected with had kids that were older than their son. This meant they were able to share advice on the different type of speech and physical therapies that were available and at what stage Logan might actually need them.

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Indeed, Jackie told Fox 5 Atlanta that they would receive invaluable responses to any query they posted on Facebook. “We post a question and instantly we have ten or 12 comments from people who have actually walked the walk,” she said.

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Logan himself, meanwhile, isn’t able to speak very much because of his syndrome. Nevertheless, he’s still able to take part in normal activities for a boy of his age. In fact, one of his biggest passions is baseball, and he loves playing in a league alongside other kids with special needs.

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And aside from being active members of the dedicated Facebook groups, the Arnolds have also joined the Mowat-Wilson Syndrome Foundation. The organization aims to better the lives of those living with the condition and help the families of those affected. Parents also share their experiences of the disease in order to give doctors more insight into it.

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And families from all over the world have shared their stories; the Foundation website features children from as far afield as Croatia, Serbia, Italy, New Zealand and South Africa. The organization also has active social media channels which help to raise awareness of the condition.

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But although Mowat-Wilson syndrome can be debilitating, that hasn’t stopped the smile on little Logan’s face. “He’s the happiest kid that you’ll ever meet,” Jackie told Fox 5 Atlanta. “If you think about unconditional love, that’s what you get from him, all the time, unconditional love.”

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And while doctors usually advise patients not to Google their symptoms, in Logan’s case it’s a good job his dad did that very thing. Indeed, that internet research was instrumental in finding a diagnosis for Logan. And it’s meant that his family can help manage the condition well, meaning as a result that he can lead a happy and fulfilling life.

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