We are winding the week down, donations still coming through the door, and people still learning about Barth Syndrome. I am so proud of all of you, so proud to call you friends and family. Again, thank you for your encouraging words, and thank you for caring enough to share HHW with your networks. And THANK YOU for giving your hard-earned money to the Barth Syndrome Foundation.
I have been so hesitant to set a monetary goal for this campaign, but I'm going to throw a vague one out there for our final day...let's blow our total from last year ($26,500) out of the water I mean, out of the water!!! A few more thousand dollars to go...We can do it!
Here are the facts I posted the past few days...
Thursday DAY 4 FACT: "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
Friday DAY 5 FACT: Since individuals with Barth Syndrome have abnormal mitochondria, EVERY SINGLE CELL in their body is affected. This is why they battle low muscle tone, muscle weakness, exercise intolerance, and energy deficiency. And studies have shown that it is real…when a boy with Barth’s does any sort of movement, they “peak” after a much shorter time and at a much different level than someone with normal mitochondria. We see this every day with Henry. It affects everything we do, from where we park the car, what activities we do as a family, what activities Henry does himself, making sure there is time for rest, etc.
Saturday DAY 6 FACT: On Wednesday, I got the official email asking for recruits for a clinical trial we are hopeful will start soon (Henry is too young to participate in clinical trials). This is very exciting, as it is the first time we (BSF) have gotten this far. I wanted to share with you an email from a mom that has lived, breathed, and feared Barth Syndrome with her son for 28 years. When I read her words, I could feel her thankfulness, relief, and anxiety with the gravity of what a clinical trial means. And I thought it was perfect for you all to see a glimpse of what your donations mean to our family, and so many others. This is real. I met this strong woman, her brave son, and her family last summer in Florida.
"Even though I have known this announcement was coming, seeing this in black and white gave me pause....Gratitude for the opportunity, the persistent drive of all involved, the generosity of benefactors, and memories of those upon whose shoulders our boys stand.
HOPE is a very big word."
Mother, whose son has had Barth Syndrome for 28 years
Hope IS a big word. I know you all stand with us as we HOPE for a treatment for Barth Syndrome.
Thank you all and I'll be in touch tomorrow :)
P.S...Wear a Happy Heart Walk shirt Sunday! And go on a walk in honor of those with Barth Syndrome :)