I just had to start our blog with a humorous story. In the midst of everything going on we all need a little laugh now and then…
Most of our friends had young children before us. So we were well equipped with countless stories from getting peed on to diaper explosions. So when it was our turn to have Jacob, everyone warned us that our adult conversations will change to baby jargon. And sure enough it did.
Read MoreOur world forever changed when our son Jacob was born. He came 3 weeks early and everything seemed to be fine until a few hours after his birth when the doctors came into our hospital room and began discussing signs that our son had a chromosome disorder. It was the most difficult situation I have ever had to face.
We felt scared, alone, and helpless. I spent countless hours trying to find resources, support, and learn all I can about his diagnosis with Beckwith-Wiedemann Syndrome.
It is my intent to create a website where parents of children with BWS can find all the information you are looking for because the last thing you need as a sleep-deprived parent with a newborn is to be spending countless hours on google!
I pray that you may find comfort in knowing you are not alone in your journey with BWS, and that you are able to discover that life is beautiful beyond the diagnosis.
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