August 19, 2018 Beautifully Different, Children 0

Beautifully Different – Christopher

Beautifully Different

A Project Celebrating Differences and Triumphs

Christopher is Beautifully Different

Meet the amazing Christopher! Christopher was born with a very rare genetic disease. He has a  XQ28 Duplication Syndrome. What exactly is a  XQ28 Duplication? Well, according to the National Organization for Rare Disorders, XQ28 duplication syndrome is a rare genetic neurodevelopmental disorder characterized by a wide variety of symptoms including low muscle tone (hypotonia), potentially severe intellectual disability, developmental delays, recurrent respiratory infections, speech abnormalities, seizures, and progressive spasticity, a condition characterized by muscle stiffness that is worsened with movement and can be associated with involuntary muscle spasms. This disease is so rare that studies came out for it in 2014! Also,  most cases of this syndrome are in the UK. Christopher is Beautifully Different!

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XQ28 Duplication Syndrome is diagnosed through genetic testing, Christopher was diagnosed when he was 2.5 years old. Christopher cannot talk and may not ever talk, though that doesn’t stop him from communicating what he needs and wants in his own way! He just started walking at age 3 with lots of help from physical therapy. Christopher looks like a typical 3 year old but cognitively he is a little behind. When Christopher was a baby, he had difficultly with eating, he would spit up all the time. He went through lots of testing for reflux, and eventually he had Nissen Fundoplication surgery and has had two extended hospital stays.

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Happy. Handsome. Tall.

Christopher is an amazing little boy! Through him being so sick in the beginning he has always been a happy and smiley boy. He has the best mannerisms and he is so incredibly cute! Christopher has an amazing support system at home who love and care for him. You can see the joy and pride on his Mom’s face when she looks at him, it’s a truly beautiful thing!

For more information about the Beautifully Different project and how you can participate, click here. To follow me on Facebook click here!

About the Author

Kathy Rogers: A Michigan native but currently residing and working in Northeast Ohio. She married the love of her life at the ripe old age of 22 and they have two beautiful children as well as 2 dogs and 3 cats!

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