Happy Heart Week 2018 KICK-OFF!
The 5th Annual Happy Heart Week 2018 has begun! Kicking off this week-long event this morning hopeful. To refresh some of you, and to share with some of you new Happy Heart-ers, what Happy Heart Week is and why we do it…simply put, we love Henry!
Henry, our middle son, turns 6 this Wednesday. When he was a baby, he was very sick; he spent weeks in the Pediatric ICU in heart failure, and months trying to get stable and play catch up—something we are still working on today. Right before Henry’s 1st birthday, he was diagnosed with Barth Syndrome, a very rare genetic condition affecting mostly males. It is a life-threatening, multi-system condition, with varying degrees of cardiomyopathy, neutropenia, underdeveloped muscles, muscle weakness, growth delay, exercise intolerance, and energy deficiency. I will share information on all of these symptoms and how they currently affect Henry as the week goes on. (For a more detailed version of Henry’s story, click here)
Historically, boys with Barth Syndrome died of heart failure or infection before the age of 3. And today, the life expectancy and quality can be quite grim. But with improved diagnosis and better symptom management, the future is looking brighter. As of now, there is NO treatment or cure for Barth Syndrome. Our hope is for a bright and vibrant life for Henry, and together with you, our contributions to the Barth Syndrome Foundation could help achieve this for Henry and the other boys and men affected by Barth Syndrome.
The Barth Syndrome Foundation is the sole organization working towards a treatment or cure. It is an outstanding group that continues to amaze us with what they can accomplish. For the first time ever, 1 clinical trail is about to wrap up and another is about to start, thanks to the hard work and funding of the Foundation. And the cool thing about the research and clinical trials on Barth Syndrome, is that it will benefit many mitochondrial diseases and heart related conditions. The Foundation is without a doubt an upstanding organization to support.
So please, join us in fighting with Henry. Consider donating to the Barth Syndrome Foundation to help ~ every dollar truly matters. Don’t forget, all donors will receive this years Henry Heart card, and it will be good ;) Click here to make a tax-deductible gift to the Barth Syndrome Foundation. Feel free to forward this on, and don’t forget to check with your employer about matching your donation.
Stay tuned for lots of facts about Barth Syndrome throughout the week. I’ll be posting on Facebook, and will include those posts in the update emails I send out, so don’t worry, you shouldn’t miss a thing! And grab your old Happy Heart Walk t-shirts and wear them throughout the week to help spread awareness. Please send me a photo of you wearing it…we LOVE seeing them!
Thank you for all your support and for participating in this important week with us!
John, Meg, Grady, Henry, and Wesley Branagh
Save the Date! HHW2018
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...
I am privileged to be the mommy of 3 beautiful and wonderful little boys, one of which has an awful disease, Barth Syndrome.
A happy heart makes the face cheerful.