Yesterday, Miracles for Mito had its first support meeting for the year. We doubled the size of our meeting this time, and had 50 people attending our event! It was spring in the air, which is a good thing when you have families traveling from out of State. The Anchor Center for Blind Children welcomed us once again to its beautiful facilities in Denver.
Our kids love the Anchor Center, especially the gym! The ball pit was one of the favorite places once again. With the spring weather, the kids also could took advantage of the beautiful garden. The kids were riding bikes outside. We also had crafts of different sorts, and cool tattoos! Our music therapist Lisa Townsend once again put on a show for the children. She is amazing in engaging the kids’ all senses, and she finds a way to get all children involved.
Parents found support in each other. Finding another parent who can help you to get the right seating system for your child’s wheel chair. Finding another parent who sees the same doctor. Finding another parent who gets it when you say that the future of your child is uncertain. Finding another parent who understands what it means that your child might have Mitochondrial Disease or maybe something different? Finding someone who gets it.
Our nurses and volunteers played with the children while the parents got to listen to two informative presentations. Our first presenter was Gina Robinson, Program Administrator from Medicaid. She gave a good overview of Medicaid, but more than anything engaged the parents in dialogue about their specific questions and issues around Medicaid. Personally, this is the first person who has told me that she is going to take on the issues around the waiver my son is on. She gave us hope, and solutions where we at times had given up.
Our next presenter was Dr. Abigail Collins from the Mitochondrial Clinic at Children’s Hospital Colorado. She gave an update on the Mitochondrial Clinic. There are many exciting things happening in the Clinic. The first thing is that they are expanding. They will go from three appointments per month to seven appointments per month. They are also looking into how they can expand the care for our children, especially in the day-to-day management of Mito children.
Our meeting always run long, but after four hours of play, education, social time, and food, it was time to pack up! The kids were happy, and left with colorful balloons. The parents were excited, and left with new information and new friends.
In the middle of living with Mitochondrial Disease, there is a place for support, finding a friend, listening to music, having fun, and more than anything, knowing that you’re not alone on this journey.
Thanks to Music Therapist Lisa Townsend for entertaining our kiddos, to our nurses Libby Neumann and Gemma Vega for caring for our Mito children, to Gina Robinson and Dr. Abigail Collins for taking time out of their Saturday to talk to us, and lastly to our Board Members playing with our children, baking goodies and providing lunch!
And THANKS to all of our families for driving near and far to spend your Saturday with us,
Vice-President, Miracles for Mito