Happy Heart Walking Friends and Family! Due to the unforeseen craziness of life with a newborn baby on top of the daily grind with three little boys, Happy Heart Walk 2016 is going to look a little different. I simply could not pull it all together in reasonable time this year. Knowing that we would love to carry on this wonderful and sweet event next spring and for many more years to come, we have decided to try something new for 2016. Thank you for remembering and inquiring about the Happy Heart Walk over the past couple of months; many of you have asked to make sure you didn’t miss something! You are right, it normally occurs in February.
In 2 short weeks, we are going to begin a campaign centered around Henry’s birthday, May 2nd. Birthdays are always such a sweet celebration. But even more to us now, birthdays remind us in a very literal way of our gratefulness for each breath everyday and our time together here on earth. For Henry’s 4th birthday (yes, 4…wow!!), we are going to celebrate his beautiful life; his challenges with Barth Syndrome; the other boys and men suffering from this disease; and the great work the Barth Syndrome Foundation is currently doing. This virtual celebration will happen the whole week of Henry’s birthday, Sunday May 1st through Saturday May 7th. Through an email and social media campaign, we are hoping to raise a similar amount that we would have through an actual Happy Heart Walk event, and possibly more, considering anyone around the world can participate! I will send another email May 1st to kick the campaign off, but mark your calendars now, and in the meantime, please thoughtfully consider how you can help us make a difference this year.
All donations can be made directly to the Barth Syndrome Foundation (https://www.barthsyndrome.org/donate/events/HappyHeartWeek2016) and will be tax deductible. We can assure you, the money will be extremely well used and is so, so greatly appreciated. This years medical grants were just awarded and it is very exciting to see the possibilities on the near horizon. And these are funded with our money. Our everyday hope and prayer is for a long and vibrant life for Henry, and this will only be possible with a treatment or cure, and ultimately through the grace of God.
Please let us know if you have any questions! And we would so appreciate you sharing our cause with your networks! Find and “like" the Happy Heart Walk page on Facebook, and watch for informative and exciting posts in the coming days and weeks! And all donors will receive this year’s Henry Card :)
As always, thank you for your prayers, care, concern, and continued support. We are forever indebted and grateful!
With Thankful and Happy Hearts,
John, Meg, Grady, Henry, and Wes Branagh
**Quick Henry Update**
Since I was MIA with the blog this year, here’s a very quick update on Henry…He is doing great! Can hardly believe he is almost four! His heart function continues to hover just below the “normal” functioning range; he is thoroughly enjoying his 2 morning a week preschool class; he can ride his bike with training wheels like a champ around the back patio; he loves to dance; he is Grady’s #1 fan, always; he is so quick to forgive; he has proven to be quite patient and encouraging in his new role as Big Brother; he loves to be silly, and loves to be tickled!
I would love to start up the blog again, and will keep you posted on when that happens :) Also, we have decided to attend the Barth Syndrome bi-annual Family and Medical Conference again this summer…it is a really big deal for us to go, but we decided that it was important to be there, for many reasons. More info to come on this~
for more information about Barth Syndrome, www.barthsyndrome.org