My son Oliver was born with mitochondrial disease and was killed by conditions associated with it at the age of 19. Some of the people mentioned in the report here were involved in his diagnosis and care.
His life deteriorated from that of a normal, fun loving intelligent kid to an isolated bed-bound disabled teenager, fed by total parenteral nutrition and suffering a variety of awful complications. His eventual passing was cruel and brutal. I'm not sure we will ever get over it as a family.
This treatment does now at least offer me a glimmer of grandchildren (my daughter having decided she would not risk children of her own until now). It's a remarkable achievement.
I'm very sorry that happened to your son, and that you and your family had to endure it.
Wanted to share same sentiment. Thanks to gp for sharing.
As a parent of teenagers it pained my heart to even read this. I cannot fathom what it is like to endure it and live with it after the fact. I am very sorry for what you experienced and what Oliver experienced.
My deepest condolences.