From IVF to BWS

From IVF to BWS

Meet the Kramlik Family Hello! We are the Kramlik Family.  I am Sarah, my husband is Mate and our son is Thomas.  We were one of the fortunate families to know that Thomas was going to be born with BWS.  It was at our 22-week ultrasound that they suspected something was wrong.  Thomas was an [...]

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 [...]