Yesterday morning our family made our way downtown (and got trapped downtown for awhile due to 95% of the streets being blocked off for the marathon) for the United Mitochondrial Disease Foundation support group. Grayson has not been diagnosed with Mito at this time, although we strongly suspect this is what he has. We are hoping if he does have Mito, the muscle biopsy he’s having in a few weeks will show it.
I’d never been to a support group before, and wasn’t sure what to expect. I was impressed that there was something for everyone- a nursery for the babies and toddlers, a kids/siblings group, parents of kids with Mito group, and adults with Mito group. Ryan and I of course went to the parents group.
The most interesting (and beneficial) thing for me was to see kids older than Grayson living with Mito. Mito is a disease that has a WIDE spectrum of symptoms and some are more severely affected than others- there were kids who could walk and kids who couldn’t, kids on oxygen, kids with braces on their legs, kids with feeding tubes. There were kids with normal cognitive abilities and some without. All the kids looked happy though, and were obviously loved and adored by their parents. I have a really hard time picturing Grayson at older ages, and it was nice to see that even kids with significant challenges are HAPPY and can have a great time on a Saturday morning.
The parents group was great- I felt on the verge of tears the entire time, both happy and sad. Sad because these families are dealing with so much, and happy because wow, it was amazing to be in a room filled with families that really get it, who really understand what we are dealing with. At one point the facilitator looked right at me and commented that I had a panicked look on my face- ha! I’ve never been good about hiding my emotions, and yes, a lot of this does make me a little panicky.
I really hope we can further connect with these families- I realized I am craving information and a connection from people who are further along in this journey than we are.
Next month, the UMDF is having an Energy for Life walk. My friend Kristi, whose daughter is also suspected to have Mito, is putting together a team. Grayson and I will be walking and if anyone would like to join us on the Lady A Team, click here. There is also a link on the page to make an online donation. We are excited to meet even more people and to help raise money to hopefully one day cure this disease!