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Changing the ignorant narrative

Changing the ignorant narrative

As a rare disease family it occurred to me quickly that the rest of the world is ignorant. Let me clarify that. You aren't necessarily a malicious person if you are ignorant. It just means that you may not be aware of how harmful some of your statements can be. Our family has experienced a [...]

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 [...]

You are a diamond

You are a diamond

After sharing a lot about my husband on social media, I realized that most people don’t know our story. I could take up pages telling you every detail about him and I but I won’t bore you to death! What I really hope you take from our story is that you deserve to be happy. [...]