Fifteen years ago, the plan for my life and the lives of my family changed significantly when my older sister Sarah became sick with what we would eventually know was mitochondrial disease. My parents did not accept mitochondrial disease as a hopeless diagnosis. Instead, they founded the guild, and honestly it was best plan they ever made. As this new plan took shape it was no longer “our plan”; just as my family was no longer limited to the people living in my house. My parents made the decision to create a larger plan and with that our priorities shifted from only finding the best possible care for my sister to also finding solutions for others. As each new family joined the guild, my “family” grew. I gained a brother or a sister, my parents gained a confidant, and our universal plan gained new ideas. This is how I watched the guild form. I witnessed a coming together of people who needed a plan, a direction to cling to while tackling this seemingly impossible hurdle that is finding care and a cure for this disease.
Obviously, I wish my sister and I didn’t have mitochondrial disease. More importantly, I would give anything in the world to see the other children of the guild completely healthy. But being a member of this guild has been one of the most singularly influential and important aspects of my life. This much larger family that I have inherited has taught me more about devotion, care, and the power of unyielding determination than I ever imagined possible. But learning these valuable lessons has not always been easy. This guild has challenged me to always and at times begrudgingly look beyond myself. As a young child I went from understanding that I could not expect to be an equal priority with my sister as her health deteriorated, to then almost simultaneously finding myself sharing the spotlight with my new brothers and sisters. This was not MY plan but it ended up being the right one.
I can tell you firsthand that having mitochondrial disease is scary, but it is far scarier to watch someone you love, in my case my sister, struggle with the disease. In the simplest terms, this guild and the triumphs we have achieved, have taken a positive step in making this disease less scary for all those involved, and thus I can confidently say that while our plan is hard and ambitious, it is working.