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.
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I am privileged to be the mommy of 3 beautiful and wonderful little boys, one of which has an awful disease, Barth Syndrome.
A happy heart makes the face cheerful.