“So, how are they doing?” That is the most frequent question we get asked about our 2 boys (ages 7 and 10) who have been diagnosed with the fatal muscle wasting disease, Duchenne muscular dystrophy. There is no easy or short answer to this question because they are both currently doing well, but yet they aren’t because their bodies are slowly deteriorating. Thankfully Duchenne life hasn’t hit them very hard yet and most of their days are just like other kids, with a few exceptions.

We previously lived in Central California and raised organically fed pork on pasture. When Kal was diagnosed with Duchenne...

It was May of 2020. What started off as a virus we were observing from the US wreak havoc first in Asia, then Europe, was now firmly taking hold locally. The two-week home school period, turned into two months and families were thrown into the impossible transition of figuring out how to work from our living rooms and support our kids’ education through endless Zoom meetings and classes. Life as we knew it was on hold…seemingly endlessly…and many were crippled with fear of the toll COVID-19 could have on us and the world we live in. But something was about to disrupt our lives in a far more meaningful and personal and terrifying way than any global pandemic ever could.