Our Life is…

Hilarious, Joyful, Medically Complex. Food Allergies, Mito, CHD. Toddler, Tween, Teen. A new adventure every day.


rare disease day

Rare Disease Day

Today is Rare Disease Day, the day the zebras show their stripes and remind everyone that hoofbeats don't always belong to horses.┬áIt is the last in a month full of awareness days for us (Feeding Tube Awareness Week, CHD Awareness... Continue Reading →

Rare Disease Day!

Today was Global Rare Disease Day and the teachers and Staff at K's school participated in Global Genes Project's Wear that you Care Day Fundraiser. They donated a total of $210 to MitoAction in honor of our sweet girl (and... Continue Reading →

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