Hello Friends! It’s almost Henry’s birthday, which means Happy Heart Week is in 1 short week! It's the 5th Annual...can you believe it? Just a quick note to say hello, and to be expecting some great info coming your way about Barth Syndrome and how you can potentially save some lives, including our Henry’s.
Many of you may be wondering why we are not having an actual event...well, to put it shortly, John and I decided it would not be best for Henry at this time in his life. I am actually quite bummed, but know with certainty that this is best for Henry right now. We are however, still very excited for Happy Heart Week and the change, power, and good that will come from our community rallying together for an important cause so very near and dear to our family. It is such a special week, and we hope that you feel that way too 😊
I am asking that you thoughtfully consider in this coming week how you could help. May it be a monetary donation, sharing this important info with your networks, or simply taking the time to educate yourselves (detailed educational information will be sent directly to your inbox 😉), please take a moment to think on how you might participate this year...