Beckwith-Wiedemann Syndrome: A warrior diagnosis

Beckwith-Wiedemann Syndrome: A warrior diagnosis

A BWS Guest Blog post by Megan Albrecht “Promise me you’ll always remember you are braver than you believe, stronger than you seem, smarter than you think, and loved more than you’ll ever know.” This very quote hangs in the nursery of our NICU Graduate, Kasey.                          October 14, 2017, our lives changed forever. After a restless night of what I thought [...]

Cancer – Care Before: A BWS Q & A with Amber

Cancer – Care Before: A BWS Q & A with Amber

Amber is the mother of Vivian. A 3 and a half-year-old little girl diagnosed with Upd Beckwith-Wiedemann Syndrome and most recently Stage 4 Wilm's Cancer. I connected with Amber on Instagram and have watched her family's journey with her daughter. Vivian had an ultrasound in December of 2019 and no cancer was seen. Fast forward [...]

Motivation & ignorance – a fuel to be reckoned with

Motivation & ignorance – a fuel to be reckoned with

Dedicated to those who stoke my fire - Thank you for continuing to remind me everyday why what I am doing is so important. Thank you for being my motivation-Mom of a mountain mover Something that I find incredibly difficult when it comes to Beckwith-Wiedemann Syndrome is figuring out other peoples reaction to Owen’s physical [...]

Decisions

Decisions

Have you ever had to try and make decisions based on something unknown? Sounds kind of impossible right? How could you possibly make an informed decision about something when you don’t have all the facts? You don’t have all the answers or information. Imagine how terrifying those decisions become when you're making them about your [...]