Shawn, Thank you for your kind message. While I'm of course so sorry that we have to talk under these circumstances, I appreciate connecting with another family that lost a son to Duchenne so early. Before Max passed away, I wondered how I would survive losing my precious son in 20-30 years, only to have him pass away at 3 1/2. While I miss him every day, and still have my monster cry-fests every few days, we are getting used to our "new normal" and the pain isn't quite as raw. One of these days, I'd like to talk to you or your wife about our losses. We still don't have a definitive answer as to why Max died, but Dr. Wong believes it was a heart arrythmia.
Take care, Shawn, and thank you again for your message.
Welcome, Shawn. I can't begin to say how sorry I am for your loss - we're all in a similar boat on this forum and I hope all the sharing that I've personally benefitted from here gives you as much solace as I've been able to gain.