Happy Heart Week 2017 is HERE! Kicking off this week-long event this morning excited and hopeful. Just to refresh everyone with what Happy Heart Week is and why it exists…simply put, we love Henry!
Henry, our middle son, turns 5 this Tuesday. When he was a little 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 more details, 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 only organization working towards a treatment or cure. It is an outstanding group that continues to amaze us with what they can accomplish. At the bi-annual International Family and Medical Conference in Clearwater, FL that we were fortunate enough to attend last summer, they announced 2 potential clinical trials that are hopefully going to start up soon, and the cool thing about the research and 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…believe me, it’s worth it ;) Click here to make a tax-deductible gift (please earmark it HHW, especially if you choose to use PayPal, as these are harder to track). Feel free to forward this on, and 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 I’ll try to keep them short ;) 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!