Welcome to Holland - Where there are no tour maps but endless possibilities.
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Welcome to Holland
My journey began the moment my 6-week-old son was diagnosed with a rare genetic disorder.
I still recall vividly the moment the doctors delivered the news, their words hanging heavy in the air as they informed us that he was one of only 32 children in the world with this condition. They had never actually diagnosed anyone with this condition but had read about it. The doctor told us he may never walk, talk, eat, or have a long life expectancy.
The doctor's prognosis felt like a relentless storm, each word blurring into the next as I crumbled to the cold hospital floor, tears flowing freely as if they could wash away the pain. At that moment, time seemed to stand still. I can still close my eyes and see myself on the ground in a fetal position in shock. That single event altered the trajectory of my life forever. It changed the course of my life, my family's life, and it opened my eyes to a world that I didn’t really know existed before my son.