About Our Real Rare Life
The Story
What started out of loneliness and a desire to help others understand has turned into so much more! I started sharing our journey raising a child with a rare disease who is disabled and medically complex over 10 years ago, and one thing is for sure, it’s been a wild 10. Updates about our son and what we were going through turned into validating and helping others along the way, forming a lovely community that I’m forever grateful for. Hope you stick around to learn more!
Meet the Family
I’m definitely outnumbered in the family full of boys! And to many people’s surprise I am married…although you won’t see or hear from my spouse much. Sharing isn’t his thing, it‘s mine. He is more than happy to be behind the scenes and not in front of the camera. Our oldest is cautious, kind, and a rule follower, while our youngest is a thoughtful, silly, boundary pusher. Our middle is Christopher who has PMM2 CDG, and although he cannot talk he’s definitely opinionated and mischievous. Life is anything but ordinary over here!