Sunday, June 30, 2019


Dear Jacob,

Tonight, I am sitting on the balcony of our hotel room with leftover wine and snacks my tribe left behind. The heat and humidity are finally fading away in the air. My feet are up after walking more than 20,000 steps in DC today. Sarah is soaking in the bath tub after walking and biking through the Capital, and seeing all the famous memorials. We're tired and happy. Over the last couple of days, families and physicians came together to share the latest research and treatments for mitochondrial disease. For a disease without cure, it's amazing the hope that you can find in a basement full of  people from around the globe. It's in the air, it's in the smiles and tight hugs, and friendships made over a glass of wine in the bar. It's on our t-shirts "I heart my mitochondria". This is the place where we all share loved ones, and losing a loved one is unfortunately not so rare.

Over dinner tonight, Sarah and I talked about the last couple of days we have spent together in Washington DC. I am literally so proud of your sister. She was dragged to Miracles for Mito's events before even starting kindergarten. She has spent all holidays and school breaks possible at Children's, and knows her way around a hospital room as a seasoned nurse.This week, she volunteered at the national mitochondrial disease conference. What we both enjoyed the most was lobbying at the Capitol. We got to advocate for a new Act funding supplements and nutrition for our Mito community and NIH rare disease research funding. We learned step by step that the Capitol is a maze, and that you can get lost more than once. By the end of the day, we mastered the underground tunnels between the different buildings as we walked between the Senate and the House of Representatives. We walked the talk.

I have proudly worn our "I heart my mitochondria" shirt. Your sister told me that someone came up to her during the conference, and told her she is part of the best non-profit in the country supporting families. I am proud of her, and I could see Sarah is proud of being part of what Heather and I and so many others have created. I wanted you to know this, Jacob. Your sister, who was your absolute favorite person in the whole wide world.

It's not just a logo on a t-shirt. I love the Power house keeping me going. I love that I know more about mitochondria than most people. I have learned to love healthy mitochondria. I have also learned the hard way what it means when your mitochondria are not working. It can be devastating, and take the life of humans we love the most, often at a too early age. It can also mean that after exercising for ten minutes, you have to spend the following three days in bed. It can mean that every doctor doubts your symptoms, and believe that it's all in your head until you meet that genius specialist who starts thinking mitochondria.

Last night, your very own Dr. Cohen got a prestigious award for lifetime achievement to mitochondrial disease. I will never forget that I last minute decided to drive to Wheatridge Recreational Center after you had had a procedure at Children's all day long. I knew the physician was going to talk about mitochondrial disease diagnosis. Right there in the rec center, I knew you had mitochondrial disease. It took five more years to prove what I knew that evening. You were demonstrating all possible symptoms but autism. I talked to Dr. Cohen after the presentation together with his metabolic doctor who was also attending. We talked about you, and we all three agreed that you needed to be started on a mitochondrial cocktail. I remember leaving the gym with a bunch of prescriptions, and a million questions in my head. I also remember leaving with a confirmation of your path and of where we were heading.

I will leave you tonight with a big full heart. The world you introduced me to will forever be mine. It's my people. It's the one place where I am not afraid of the reaction when I utter the words that you are no longer in this world. We hug a little tighter, we squeeze each other hands a little harder. We all know everyone is fighting a battle, and a little compassion and kindness will go a long way. We believe everyone deserves a little happiness. Everyone is fighting some sort of battle in this world.

It has been three long years without you. I wanted to let you know that your sister is ok, and I am so very proud of her.

Sweet Jacob I love you to the moon and back,


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