The mother of a local boy with a rare syndrome is speaking out after it took 8 years to get a diagnosis. She wants other parents to know, it is okay to keep pushing for answers.
To most people, 9-year-old Alex Morlan, looks perfectly normal on the outside. But on the inside, this active Granger boy, is special.
"My job is to prepare him in every way possible to have the best adulthood he could potentially have," says Alex's mom, Lori.
Lori has known since Alex was a baby, that he was somehow different. At 6-months-old he wasn't meeting milestones like other children -- he was slow to crawl and speak. Lori says, doctors dismissed problem after problem, but she knew something was wrong.
"But something in me kept -- it just didn't feel right," says Lori, "I wanted to trust and believe that completely but something in me said there has to be more."
One day, while watching James Durbin on American Idol, curiosity got the best of her. Durbin has Tourettes and Aspergers Syndromes but still managed to stand out as an exceptional singer on Season 10 of the popular show.
"I was just watching him and was like, 'wow.' He seems so normal but has these diagnosis. Which is similar to alex he seems so normal but he struggles," says Lori.
Seeing how well Durbin functioned on television, Lori started an internet search, hoping to find answers for her son. That search would change their lives.
"I started getting a little nervous he was fitting many categories that show that he might have a genetic disorder," says Lori.
Their doctor was skeptical but did a genetic blood test -- and finally, after a long wait, Lori and Alex would learn the truth: Alex has 48xxyy syndrome -- he has an extra x and y chromosome. It is an anomaly that affects only boys. Doctors estimate that about 1 in 40,000 boys are affected. There are only 2 other reported cases in Indiana.
"It is hard to hear that your child has something that your doctor knows nothing about and they don't know what to do for you," says Lori, "it is a scary place to be."
But at least now, Alex can be treated. There is only one doctor in the world that specializes in this syndrome. That doctor is in Colorado. Lori and Alex flew out to see her last year. The entire family, Lori and her husband, Alex and his 2 brothers, will fly out again this summer.
Lori's advocacy for Alex hasn't stopped with a diagnosis.
"There are a lot of unknowns and when I start to worry about that I have to refocus myself to enjoying the present and all he has in life right now," says Lori.
Pushing for answers: A mother's fight to find a diagnosis for her son
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