
Michael Jr. and I found these random painted rocks at Tyler Park. The one stats "I choose peace" and the other "I'm a survivor"
OUR LIFE NAVIGATING BWS & PARENTHOOD
A guest blog post: Meet the Charlebois Family I'd like to start this off by introducing myself! My name is Crystal, I am from Ontario, Canada where i live with my little family, my husband Shaun and our 3 beautiful daughters, Cherokee (7), Grace (6) & Lennon (23 months, BWS). I guess our BWS story [...]
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 [...]
A common thing that many BWS parents have noticed with their children is their inability to regulate their body temperature. Before my blog I had no idea this was a common theme that many BWS children struggled with. It wasn't until I started to connect with BWS families and ask them, that I realized many [...]