Andrew and I attended a PMD conference this past week where we had a chance to meet with some of the researchers and hear about the latest developments in the field. That’s what I expected. I also expected to meet some families who have kids with PMD.
What I didn’t expect was to feel so comfortable in a room with so many wheelchairs, suction machines and several kids being tube fed at any given time. Basically, we were in a room with families like ours. Many had healthy kids, in addition to the PMD ones. There was something comforting about being surrounded by this group of people.
Some kids were able to walk and speak. Most kids looked more comfortable in their wheelchairs than Jacob ever does in his. An amazing thing was that most of these kids are happy and have the same silly, mischievous sense of humor that Jacob has. There was a definite feeling of unity among these families. We share something that only we can fully understand. That part was great.
The sad part was that last time we were at this conference, shortly after Jacob was diagnosed 6 years ago, we looked around the room and thought that Jacob looked so much stronger/healthier than the kids we met. This time things were different: Jacob is older. He has a severe form of the disease. And it’s degenerative, so it gets worse over time.
Looking around the room last week, I realized that most of the kids seemed healthier than Jacob. They can move their limbs more freely and are more relaxed. This is when I was forced to acknowledge that the degenerative aspect of this disease has started to affect Jacob. Despite all the therapy and movement, it is still progressing. This makes me more determined to find a treatment or push for a cure. Even a small step forward in treatment options can have a profound affect on Jacob’s quality of life. But we have to hurry.