WEATHER WATCH
Tri-Cities girl is one of 100 people in world with rare genetic disorder
Courtesy: George Family

October 10th was Ogden Syndrome Day. If you didn’t know that you’re not alone.

If you don’t know what Ogden Syndrome is, you’re not alone.

Ogden Syndrome is an X-link or X-chromosome disorder that occurs due to a mutation to a protein coding gene essential for normal cell function.

It was only discovered in 2011.

Amelia George is one of only around 100 folks in the world living with Ogden Syndrome.

“It’s like everything is in super slow motion,” said Gerrad George, Amelia’s dad. “Especially now dealing with our new child. Every single milestone, or inch-stone, we’ll call it takes so long to reach and get to and when you do it’s a big celebration. She’s over two and a half years old now and it’s still like having a four-month-old. You have to pick her up, you have to hold, you have to bottle feed her.”

Amelia was first diagnosed at Seattle Children’s Hospital when she was 13 months old. The doctors didn’t know anything about Ogden Syndrome and handed the George family only one page of information.

The two-and-a-half-year-old Kennewick resident weighs only 18 pounds, she has a hard time coordinating her movements, she can’t walk or sit up, her vision is like looking through a kaleidoscope and she is intellectually disabled.

Amelia loves going on family walks in her stroller, she loves when people compliment her glasses and above it all, she loves other kids, especially her baby brother Calvin.

There is no known cure, only physical and occupational therapy.

There is also no cap on lifespan, the oldest known patient is 36 years old.

The George family also shared with Action News how difficult it is to set up an infrastructure to collect money or even find doctors that will research Ogden Syndrome because of how relatively new it is.

Click here for the Ogden Syndrome US Foundation.

Click here for the Patient Organizations Website.

If you’re interested in researching Ogden’s further, email Researchogdensyndrome@gmail.com.

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