Blog Feed

Overheating to anger

Overheating to anger

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 [...]

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. [...]

Leave your mark. What journey will you take?

Leave your mark. What journey will you take?

It wasn’t until Owen was recently hospitalized that I realized how much of an impact he has had on people. Most of those people he has never even met. Choosing to share our family's story has turned into so much more than I expected. Sometimes it's overwhelming. Sometimes it’s stressful and quite honestly sometimes I [...]