Still floating on a high from your overwhelming generosity! I have received several very kind and very grateful notes of thanks from other Barth families and I wanted to pass them on to you. Everyone is really excited and thankful about the money and awareness raised through Happy Heart Week! Thanks again everyone! So proud to call you friends and family.
“Please send my deepest appreciation for everything you've done to help our Barth family!"
“$50,000 is really amazing – I am speechless! What you have done for the BSF is remarkable. “ “Thank you, thank you, thank you for doing this for all of our Barth guys!”
“I send my sincere gratitude to you for doing this...”
“…the incredible generosity and kindness of your friends and family.”
“That's amazing. Thanks so much!!!!!!!!!!!!!!! You have wonderfully generous friends and family.”
“We are SO grateful!”
“Holy cow. Amazing.”
“So so awesome! Just WOW! Thanks SO MUCH!”
“Just a note to let you know how much we appreciate all your (considerable!) efforts on behalf of your son and all of those served by our BSF. (Our family) has been at this, as have several others, for many years now and we are incredibly excited to finally see our first trials starting. There are never any guarantees of course and we still expect a marathon in front of us… but that does not diminish the excitement nor dull the appreciation for where we are now. And we particularly appreciate having other families join the group. Families like yours that are willing to jump in and help us make a difference.Your Happy Heart Week fund raiser will help us award one more grant this year and that could make all the difference. Thank you so much. So glad you guys have our back like we have yours!”
For a personal video thank you from the BSF executive director, check out
Hope you feel the gratitude from our Barth community.
Happy Mother's Day!
It is with so much gratitude, awe, and amazement that I share with you all what a tremendous job YOU did with Happy Heart Week 2017…
We have together sent over $50,000 to the Barth Syndrome Foundation this past week!!!!!
$50,341 to be exact.
We can’t even believe it.
Woooohoooooo! Yippppeeee! Hip hip horrrraaaayyyy!
You guys are the most generous, caring, supportive, compassionate...the list goes on, group of people.
Every year, especially this year, I am blown away by what can be accomplished when people come together for a like cause. The results are incredible.
I hope you all feel ownership in Happy Heart Week…I couldn’t have done it without you! The amount of money raised, the awareness spread, the lives touched by your showing of care…thank you.
Thank you for reading my emails.
Thank you for reading and liking my Facebook posts.
Thank you for sharing facts about Barth Syndrome and how to help with your friends, family, and companies.
Thank you for sending sweet words of encouragement throughout the last week.
Thank you for your thoughts and prayers…we felt them in very tangible ways.
Thank you for allowing yourself to be moved to give, and then acting upon it.
Thank you for giving your money to help with something that could so greatly affect our family.
Thank you for genuinely caring, so much so, that you would do any of the things listed above :)
We are forever touched, completely indebted, and so very grateful to have you in it with us, part of our Village, helping to hold us up, even before we know we need it. Please know how loved you have made us feel. Not that a dollar amount quantifies love, but just the fact that so many people gave and contributed in some way, shows us such great love. We continue to be deeply inspired by those that have so faithfully year after year given to the Barth Syndrome Foundation, and those that gave for the first time, many that don't even know Henry.
We are praying over the gifts you made to the Barth Syndrome Foundation; praying that they will be thoughtfully used, and that they would be part of an important step in finding a cure for Barth Syndrome. If you donated, your Henry card will be in the mail soon :)
If you were not able to contribute this time, please don’t worry. Simply educating yourself is helpful for the greater cause. And if you find you want to give at a later date, the Barth Syndrome Foundation is always happy to receive a gift, any time of year. www.barthsyndrome.org
Another way we can all continue to help, without giving any extra money, is to shop on Amazon Smile! It has the exact same products and pricing as Amazon, but it allows you to choose a charity that Amazon will donate 0.5% of your purchase to, all the time. Once you choose your charity (Barth Syndrome Foundation), you don’t have to do anything but continue to shop on Amazon Smile! www.smile.amazon.com
I will keep you posted on the clinical trial I mentioned and any other exciting news that we may hear, as well as Henry's health and how our little man takes to kindergarten this fall :)
While hard, exhausting, and emotionally draining, this week was full of celebration for our family and the beautiful 5 years of life that Henry has shared with us. We are blessed! Thanks for being a part of it.
With very full, happy, and hopeful hearts,
John, Meg, Grady, Henry, and Wesley
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 :)
Hello Happy Heart Week Supporters! Just a mid-week check-in to thank you for the donations thus far, (I don’t have a current total) but know that we are well over $10,000! This is great! Keep them coming! I also wanted to share with you the facts that I have posted on Facebook this week. Please continue to share them with your networks…spreading awareness is vital in raising money for research.
DAY 1 FACT: Barth Syndrome is a life-threatening, multi-system condition, with varying degrees of cardiomyopathy, neutropenia, underdeveloped muscles, muscle weakness, growth delay, exercise intolerance, and energy deficiency. Cardiomyopathy is a chronic disease of the heart muscle (myocardium), in which the muscle is abnormally enlarged, thickened, and/or stiffened. The weakened heart muscle loses the ability to pump blood effectively, resulting in irregular heartbeats (arrhythmias) and possibly even heart failure. It was Henry’s cardiomyopathy that ultimately landed him in the PICU, and that lead to his diagnosis, made through a genetic cardiomyopathy blood panel. He continues to take maximum therapeutic doses of 4 serious heart medications and several supplements twice daily to maintain stability in his heart function.
DAY 2: HAPPY 5th BIRTHDAY HENRY! What a joy you bring us! You are so silly ~ you love to make people laugh; you are adventurous ~ often willing to try new things even when other are not, and always up for some fun; and you are the most generous little soul ~ continually eager to give and share, material things hold little meaningful value to you. Thank you for teaching us how to better live life every day. We love you more than the “whole wide wirld”!
DAY 2 FACT: I bet you had never heard of Barth Syndrome before you met Henry. Did you know that there are only approximately 200 known living people in the world with a confirmed diagnosis?!? And this is why it is IMPERATIVE for us to educate as many as possible and to tap into all of the resources we can, knowing that our pool of supporters is so very small. Help us raise awareness by sharing our cause! To help make a difference by donating, visit the link in the comments below.
Thank you, thank you, thank you!
DAY 3 FACT: Another life threatening symptom of Barth Syndrome is Neutropenia. Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low level of neutrophils, a common type of white blood cell important to fighting off infections. Neutropenia is quite varied among individuals with Barth Syndrome—some are chronic, some are cyclic, some are intermittent, and some don’t seem to have it at all. Many of the boys and men we have met must have a daily shot to help with neutropenia. One very knowledgeable doctor describes neutropenia in Barth Syndrome like a “sleeping tiger”. Thankfully, Henry has not had any major problems with neutropenia yet.
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!