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