We had our regular three month appointment with Dr. Koenig recently and when we arrived we had a big surprise awaiting us.
As we were getting Will's weight (38 pounds) height (3'5) and head circumference (big) we saw a big red ribbon in the hallway with a big red bow.
It was the official grand opening of the UT Mitochondrial Center of Excellence, Leighs Syndrome clinic and they asked Will to cut the ribbon! They had a photographer there, the schools media relations people and it was quite the scene. I was really sad that Neil couldn't come that morning because he got double booked for work and we assumed it was a "normal" appointment.
After they told us the only thing I could think was thank goodness I did my make up that morning. I was about to run out of the house in my grunge and am REALLY relieved I made an attempt to put myself together.
Joining us for the ribbon cutting was another awesome Leigh's family, their little boy is adorable and Will was pretty excited to see a "baby" - he thinks anyone younger than him is a baby.
Will got to use a really large pair of scissors to cut the ribbon and liked it so much he just kept on cutting the ribbon after the official ceremony. We got to take a piece of it home which I will have to figure something special to do with it.
Melissa Knight, Shawn Huddleston, Lakeesha Minor, RN, Dr. Mary Kay Koenig, from left, Sandra Birkline kneeling, at left,with her son Kaden Huddleston and Lori Martin kneeling with her son Will Martin all gather as Will cuts the ribbon to the new Leigh Syndrome Clinic located within The University of Texas Mitochondrial Center of Excellence at the UT Professional Building in Houston, Texas.
As far as I know, this Leigh's clinic is the only clinic focusing on clinical research for Leigh's kiddos in the world.
One thing that I recently "realized" or finally clicked for me is that the UT Mitochondrial Center is NOT just Dr. Koenig - it's actually a center with many doctors. She is the neurologist leading the program, but really she has worked hard to engage an entire team of doctors who "get" mitochondrial disease and who are committed to learning more about it and treating patients with multiple problems. So instead of seeing a neurologist for a cardio problem or a GI problem, she can refer you to people in the system (records sharing) and these people actually get how the mitochondrial disease can affect your body. What a concept huh?
I also want to say thank you to some families who are going above and beyond to put together an event to help raise money for this non-profit. Thank you so much to Keith & Bridgette Bilski, Mitch & Joelle Derrick, Andre & Lauren Granello, Peyton Jones, Andre & Bridgette Kostelnik, Walker & Sandra Molinare, Craig & Tahra Peterson, Mike & Emily Sperandio, and Ken & Janae Tsai. We are so honored that you are doing all that you're doing. Thank you.
Stay tuned for more on this front!