Just wanted to let you all know that our final amount raised for the Happy Heart Week 2016 campaign is...$26,200! WoooHooo! THANK YOU ALL SO MUCH. When I look over the list of donors, I could cry (and I have!) out of thankfulness. Feeling so blessed that our Village cares so deeply and is so very generous. Again, thank you for all of the ways that you may have participated in HHW this year...your thoughts, your prayers, your time in educating yourself, your boldness in sharing our cause with your networks, and of course your money. Couldn't have done it without you.
A couple of things in closing...
Thank you. Thank you. Thank you.
The Branagh Family
Henry with best friend and cousin, Josephine
We did it! We have officially crossed the $20,000 goal! I'm not totally sure of final numbers, because I know of some donations that have not been fully accredited to HHW, but I will let you know later this week how much we raised. And by "we", I mean all of you. We are completely blown away by your generosity, care, and concern. We feel so loved, once again, by our "village" and feel so blessed to have you behind us. It is truly amazing the things that can be done when you rally together for a like cause. Thank you for loving our family and caring about Henry and his future. We are eternally grateful.
Thank you for taking the time to read my long emails and learn something about Barth Syndrome :)
Thank you for celebrating Henry's 4th birthday with us.
Thank you for forwarding my emails to your friends and family, broadening our bandwidth, which makes our Barth Community stronger.
Thank you for sharing my posts on Instagram and Facebook with your networks.
Thank you for wearing your shirts at some point this week.
Thank you for your thoughts and prayers, for Happy Heart Week 2016 and for Henry and his Barth buddies.
Thank you for honoring all of the boys and men that have Barth Syndrome, the ones to come, and the ones that have gone before us.
Thank you for giving your money to the greater cause of finding a cure for Barth Syndrome.
IT ALL WILL MAKE A DIFFERENCE, I am certain! Great advancements are on the horizon; we are hopeful! Thank you for raising our hope to a new level this past week.
A couple of things in closing this amazing week...
* It is never too late to donate! If for whatever reason you missed this week, any donation any time will always be so greatly appreciated. https://www.barthsyndrome.org/donate
* If you donated through PayPal, let me know so that I can let the Foundation know to designate your contribution to HHW2016.
* If you have any questions about any of the facts, our story, or anything Barth related, I am happy to talk!
* If you have any suggestions as to how to better communicate, raise awareness, or raise funds, please let me know! Would love feedback on how to go forward with HHW in the future.
* Shop on Amazon through AmazonSmile, setting your charity as Barth Syndrome Foundation. It is the exact same as regular Amazon, but they will donate 0.5% of every purchase you make to your non-profit of choice! http://smile.amazon.com/
* Please find us on Facebook and "like" the Happy Heart Walk page, showing your support to the masses. https://www.facebook.com/happyheartwalk/
Thank you. Thank you. Thank you! Can't say it enough. Will keep you posted on the final number :)
With oh-so Happy Hearts,
John, Meg, Grady, Henry, and Wesley
One blessed Mama...
Happy Heart Week 2016 mid-week update and encouragement...
First, thank you to everyone that has already donated! So far we have raised $11,500! This is great, and I am hopeful that we can still surpass last years amount of $20,000. Each year, the total amount raised has doubled, and while that seems like a very lofty goal, we sure would like to at least raise more than we did last year! 2 more days of Happy Heart Week 2016!
* If you would have purchased t-shirts for your family if we had them for 2016, consider donating at least that amount this year.
* Ask your company if they could match your donation! So many will! Not only is that a terrific way to get more money to the Foundation, it's a great way to raise awareness, as I'm sure they have never heard of Barth Syndrome.
* Consider sharing one of our posts through Facebook to your networks, or through email to your family and friends
* “Like” our Happy Heart Walk Facebook page to show your support
Friends, I am sending this email with such a heavy heart. As we celebrate Henry's 4th birthday this week, another family in our Barth community has lost their son. A little 14 month old boy, Josh, bravely lost his battle against Barth Syndrome this weekend awaiting a heart transplant. Please keep his family in your thoughts. I don't tell you this to guilt you into giving, I tell you this so that you know how real this is. It is imperative that we do all that we can to raise awareness and funds for the research being done to treat and/or cure this life-long disease. The bandwidth of people that know of and choose to support Barth Syndrome is so narrow, making the need so much greater. Boys are dying at an unfair, unnecessary young age. Let's change this.
Thank you all for your support, love, and donations!
Lastly, get your old Happy Heart Walk shirts out and plan to wear them Friday (tomorrow) and Saturday. Go for a walk in honor of all of the boys and men suffering from Barth Syndrome, and send us a picture!
With Hopeful Hearts,
John and Meg
If you missed the posts on Facebook this week, here they are:
May 2nd...Happy Birthday my precious 4 year old! We have been joking that we are really going to miss "3 year old Henry” (which I am), but I am so excited to see what this next year of life has in store for you. Words that describe you on your 4th birthday…selfless, patient, generous, silly, tough, content, thoughtful, caring, fun, sweet. We love you so incredibly much.
FACT: Historically, boys with Barth Syndrome died of heart failure or infection by three years of age, but with improved diagnosis and appropriate medical treatment and monitoring of all symptoms, the survival rate and future of these individuals is much brighter.
Please help us in our efforts to raise money that could help find a treatment or a cure (there currently is none; only symptom management as needed), allowing Henry the longest and most pain-free life that this world can offer. Thankful for your consideration.
May 3rd...Thanks so much for all of the birthday love yesterday! Henry had a great birthday, still celebrating today :) Help us continue to beat the odds and celebrate MANY MORE BIRTHDAYS with him by donating money to crucial research being done for Barth Syndrome. Help find us find a treatment! Thank you to everyone that has already donated!! Feeling very loved!
FACT: Barth syndrome is an x-linked recessive genetic condition, meaning that it can be transferred from mother to son. A mother who is a carrier of Barth syndrome usually shows no signs or symptoms of the disorder herself. There is a 50% chance that a boy born to a female carrier will have Barth syndrome, while girls born to a carrier have a 50% chance of being carriers themselves. All daughters of a male with Barth syndrome will be carriers, though none of his sons will be affected.I am not a carrier, which means that Henry's mutation is "de novo", the first of its kind. Grady and Wesley have also been tested and do not have the mutation.
May 4th...FACT: Typically, boys with Barth Syndrome present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) within the first few months after birth.
Slow (actually no) weight gain was the first red flag that something was wrong with Henry when he was 2 months old. Thankfully, when he was 3 months old and still not growing, his pediatrician ordered several tests and sent us to a Nutritionist, who admitted Henry to Children's Hospital Oakland immediately. The next morning an echo-cardiogram (an ultrasound on the heart) was done after his EKG came back alarming, and Henry was diagnosed with Severe Dilated Cardiomyopathy and was in heart failure. We are forever grateful for concerned and proactive doctors that trusted their intuition, taking care of Henry before it was too late. He could have gotten very sick. We then spent 5 weeks in the PICU until Henry was stable on oral medication to come home.
May 5th...FACT: By supporting the research the Barth Syndrome Foundation is funding, you are also supporting other diseases like diabetes, cancer, mitochondrial disorders, and heart conditions.
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