Today, I had the amazing opportunity to meet 10 families who were also on this Mitochondrial Disease Path. Ten families, some of whom have a diagnosis and have been on this journey much longer than us with children in their teens, some of whom just recently received a diagnosis and have been seeking information and support, and some of whom, like us, are undiagnosed but suspected of having mitochondrial disease and whom are going through the painstaking process of testing and waiting to figure out if mito is what “it” is for their child. No matter where we all were in this journey, however, the one thing that was amazing to me, was to be in a room filled with families who “GOT IT”, who you could share a story with about your child and instead of a look of disbelief and shock that you may normally get telling the same story to a stranger (or a friend), their heads shook in agreement…in that “been there, seen that, done that” type of way. The comfort and support that type of understanding brings to another mom is….. priceless.
A huge THANK YOU goes out to Mitoaction.org for sponsoring today’s social and to Memorial Hermann Hospital Katy for hosting us. Without these 2 organizations, today would not have been possible…and I am so grateful that TODAY WAS POSSIBLE, for so many reasons.
Here are some pictures of the event…and some of the “fun” details that I (along with D.N. -your key chains were a HUGE hit! and E.B.– your bows rock!) have been working on for the past few weeks. Thanks ladies, I couldn’t have done it without (mitochondri)YA’LL! 🙂