Monday, October 14, 2019


Dear Jacob,

We celebrated the mitochondrial community this weekend. We had a full house at the Field House.

It was a travel back in time to the 80s with leg warmers, neon colors, and oversized sweaters. Decorations were rad, music was fun, and our friends went all the way out for our community. We could not have asked for more.

We also happen to have the best Mitochondrial physician we could ask for. The best one. He speaks to the hearts of a whole room. He makes mitochondrial disease manageable. He cares about his patients. He partners with us. He knows what he can do for his patients, and where Miracles for Mito can step in. A mom squeezed my arm and said: " I want him to be my son's doctor". I could only agree, even if I can not wish this disease on anyone.

Our event brought me back to the 80s. Little did I think about having a family or having a child with mitochondrial disease one day as I lived through my teenage years. Mitochondrial disease changed who I am today. You taught me things about life who can only be lived. You learned me how to be a fire fighter and how to deal with uncertainty and fear. You taught me the incredible lesson on how to go on living despite the incredible loss of you. How to go on living and even find beauty in this world when the most beautiful thing has been ripped out of your heart. They are survival skills. It doesn't mean I won't fall again. It doesn't mean I won't hurt again, but I know how to land on my feet.

I could have walked away from mitochondrial disease and this community three years ago. I could have, but it was never an option. Having lived in the community for ten years and created Miracles for Mito meant that there was no way back. There was only one way forward. I am not going to lie. It is not always easy. I wanted you to be at our first Holiday party. I wanted you to sit next to Santa. I wanted to celebrate another Christmas with you. The thing is that no matter how deep I grieve, it can not take away the smile through tears from another Mito mom. On Saturday, one of our Mito children turned 16. Her family chose to celebrate her sweet sixteen birthday at our silent auction. Not everyone has a full room of people singing happy birthday. Not everyone get to dance to Footlose with your mom's arms wrapped around you. That makes me happy. It makes me happy because you taught me the incredible gift of enjoying each moment and understanding when those moments happen in life. 

It's a horrible disease that hit you, our family, and the families we support. In the middle of the cruelty of this disease, we have created something beautiful. Something that is here to stay, something that is incredibly meaningful, something that will never forget you, Jacob. This is the work of Miracles for Mito. This weekend, I felt the fruits of our hard work. We are making a difference, and I am keeping my promise to you. We will keep fighting the good fight. We will continue to do more.

Jacob, I love you to the moon and back.

Love, mom.

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