Story about Beckwith-Wiedemann Syndrome .

Our family

Apr 1, 2019

Year Condition Began: 2018


My husband and I have two beautiful happy boys. Michael Jr. (4) & Owen (1). Owen was born with a very rare genetic syndrome called Beckwith-Wiedemann Syndrome. This syndrome affects his rate of growth in an extreme way. It also predisposes him to a higher risk of developing childhood cancer as well as many other issues. Not much is known about Owen’s condition for the simple fact that it is something so rare. I remember when he was diagnosed two weeks after he was born. I was scouring the internet for any resource I could find and there wasn’t much. Luckily I stumbled across a few blogs and a Facebook support group for the syndrome. Those resources to this day have been so helpful for me. Not only do I want to tell our family’s story, I also want to educate others on Owen’s syndrome. I want to educate people that he’s not different. He’s special and perfect just the way he is. I want others to gain understanding and acceptance that every person is valuable and special no matter what they are born with. We hope you enjoy following along with us in this journey.
Love The Thomas Family

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Story about Beckwith-Wiedemann Syndrome

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