about
Hi, I’m Mary, the parent of an adult child with a very rare genetic condition called Coffin-Siris Syndrome. This condition appears once in 600 million births, and raising a child with a rare condition along with severe developmental disabilities has been a unique journey. I also have several neurotypical kids, and caring for a special needs child while being supportive of siblings is a significant challenge as well. Over the years, I’ve learned a great deal about healthcare, education, government support, therapy, self-care, and much more. I’m here to share my experiences with you and offer support and insights to other parents navigating similar paths.
Why AwesomeLuck?
When my son was diagnosed and I realized how rare the condition is, I felt like I’d beat all the odds to have a child with incredibly demanding and frustrating needs. Over time, I realized that “awesome luck” wasn’t sarcastic at all – I truly am quite fortunate, despite the bumpy road this entails. At Awesome Luck, my goal is to create a community where we can embrace the chaos of special needs parenting together.
Thank you for joining me on this journey!
Tom