I'm very sorry you are going through this.
Do you know if Ron Davis' study did Whole Genome Sequencing (WGS) or Whole Exome Sequencing (WES) on the participants? If not, do you know what genes he was looking at? Or was it just the genes in the mitochondria which can only be passed to children from the mother? Did they give you your VCF files for the genes that they looked at? Was it blood or saliva or cheek swab? Sorry, I'm the geeks geek.
At the spring MitoD conference, one of the MitoD doctors said that regularly he has patients that nobody can figure out and after reviewing their cases and symptom history he'll do the WES. What he has found on many occasions is that it turns out not to be MitoD, but various other genetic diseases that nobody thought to test for because they are so unusual. My hope is that doctors looking into MitoD are really looking for anything that would answer the question of "What the heck is wrong with me?", rather than just looking at the MitoD mutations known on that day.
I'm a big believer in WGS/WES. Then as new mutations are then lumped into MitoD, one just needs to rerun their VCF file comparing it with known pathogenic mutations.