Friends and Family! Happy Heart Week has officially started! Today, May 1st through Saturday May 7th, we will be raising money to support the Barth Syndrome Foundation. Please help us surpass what we raised last year, $20,000. We need all of your help, please! Any amount really makes a difference. And remember that many employers and companies will match your donations, so try asking yours this week! Donating is super easy...just click on the link below. Money goes straight to the Barth Syndrome Foundation and is tax deductible. And you will get the 2016 Henry card :)
If you have been missing my posts on Facebook, here they are! I've been sharing facts about Barth Syndrome (and super cute photos of Henry), and will continue to do so this week. Please feel free to share these, and always let me know if you have any questions.
* Barth syndrome (BTHS) is a life-threatening, X-linked genetic disorder, primarily affecting males. It is caused by a mutation in the tafazzin gene.
* Barth Syndrome is a multi-system disorder and has several debilitating symptoms including cardiomyopathy, neutropenia, underdeveloped skeletal system, muscle weakness, growth delay, exercise intolerance, and cardiolipin abnormalities.
* One of the most life threatening symptoms of Barth Syndrome is Cardiomyopathy. Cardiomyopathy is an abnormal heart muscle. It makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure. Henry has Dilated and Left Ventricular Non-Compaction Cardiomyopathy. He spent the first 1 1/2+ years of his life in heart failure. He continues to take 5 medications twice daily to help keep his heart stable, and to hopefully repair some of the damaged heart muscle.
* Neutropenia is another symptom of Barth Syndrome that can also be life threatening. Neutropenia is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. This symptom can vary between those affected by Barth Syndrome...Henry has not had a problem with this yet, as far as we can tell through his routine lab work. And so far so good staying relatively strong and healthy while attending preschool.
* Underdeveloped skeletal musculature, muscle weakness, and exercise intolerance can all be symptoms of Barth Syndrome. All muscles, including the heart, have a cellular deficiency which limits their ability to produce energy. Doesn't stop Henry from playing hard and cheering on his favorite basketball team, "Teff". Aka Steph Curry.
* We all know that Henry is special. But did you know that he is 1 of only approximately 200 diagnosed males living in the world today?? A fact that proves the need for us to HELP!
* "The cruelest irony about Barth Syndrome is how deceptively healthy those who have it may appear. A casual observer would never appreciate them to have such a devastating illness."
~Peter Barth, MD, PhD
More facts and photos this week, as well as updates on how we are doing with fundraising. Please don’t forget to “like” the Happy Heart Walk page to see all of the updates and share our posts on Facebook.
Thanks in advance! We are hopeful and excited going into this week!
John and Meg Branagh