On every rollercoaster I have ridden on as a rare disease patient there are lots of highs and lots of lows. The rides down are fast and so quickly progress is taken away... and the road back up feels endless. But trusting that at some point, the ride will end, is what gets you through your hardest moments.

We are right at our 3 week point. Crazy how life changes in an instant. Knock on wood we’ve remained healthy so hopefully our efforts are paying off.

Of course, the thought of being on lockdown for two months or longer is hard to truly digest.  Many times this week I have been reminded of other times in our life in the last decade…

I get asked a lot right now about how I am doing given the corona virus. Most people know me and my son live with chronic rare diseases - diseases that are complicated enough without adding a corona virus to the mix.