In 2017 Andrew and I welcomed our daughter Angelina to the world. She had matted black hair and eyes that had not decided what color they would be. As the months passed her hair changed from black to red and her eyes changed with the weather. By the time she was 6 months old she was not sitting unassisted so our pediatrician referred us to a neurologist for an MRI. By Angelina’s birthday it was confirmed that she was diagnosed with a Mitochondrial Disease called Leigh Syndrome, one of the most agressive forms of Mito. She only had an average of 2-3 years to live.
From that moment on we did not take one second for granted. We seized every opportunity to create memories with her and our families and to enjoy each moment we had with her. Life as a special needs parent was not easy. It was stressful and scary. We were careful to not expose her to anyone who was sick, but also balanced with being able to live life fully and enjoyed play dates, the park, and visits to the zoo.
Angie was given a G-tube just after her 1st birthday. It allowed us 6 amazing months with her. The Mito Cocktail does not work for all Mito kids, but for Angie it did wonders. She went from an almost lifeless body sleeping 16 hours a day to one full of energy and smiles. She could sit, pull herself to stand, and walk in her walker.
One day Angie threw up and hours later we were in the PICU. Three weeks later we were saying goodbye to our beautiful blonde haired blue and brown eyed girl.
Angelina’s diagnosis taught us to live for each moment no matter how big or small they seem. The most important thing in life isn't going to the gym or running the race, but the people you share your life and experiences with. It was a gift knowing that our time with her was short because it taught us and everyone around us how precious life is. To stop the hustle and bustle of everyday life and just be present.
I miss being a special needs mom. I miss the stress, the lack of sleep, the countless appointments, I miss it all. Angie should be here today.
My hope is that through the many fundraisers we are doing that Mito will be a mainstream topic and organizations like UMDF will one day be able to find a cure.
The 2020 Chicago Marathon will be UMDF Team Activate's 10th year participating in the marathon as a charity partner! I could not think of a better reason to spread awareness and raise money in Angie's name.