Happy Heart Walk 2014 T-shirts preorder

The 2nd Annual Happy Heart Walk will be at 10am Saturday, February 22 at the Lafayette Reservoir. It takes about 1 hour to walk the nearly 3 mile trail around the water. After, we will congregate and picnic and play in the field by the playground. The purpose of the walk is to heighten awareness of Barth Syndrome and to raise money for the Barth Syndrome Foundation. It doesn't cost to participate in the walk,  but we are selling t-shirts and accepting donations to be passed directly to the Barth Syndrome Foundation. Of course, we would love to send a lot of money to the Foundation at the closure of the event, but we would be beyond glad just to have you walk and/or party with us after! That alone shows our family and this cause so much love and support.

I am going to be taking pre-orders for the shirts starting now, until Feb. 1, so that I have a general idea of how many to order. We will have extra the day of the walk if you are unsure or change your mind and decide you want one because they are so cute:) The adult shirts will be heather red T's with the Happy Heart Walk heart and logo in white. The youth and toddler shirts will be a red t-shirt with the same printing. Good looking, I would say! All of the profits from the shirts will be given to the Barth Syndrome Foundation.

Sizes and pricing are as follows:

Adult Unisex S-XXL $20 each

Youth XS-XL $18

Toddler S(2T), M(3T), L(4T) $18

Special Family Deal: If you are buying 2 adult shirts for $20 each, any youth or toddler sizes that you want will be $15.

Please comment here or e-mail me your order by Feb. 1 to ensure that you get the sizes you want. You can pay when you get the shirts.

If you are just tuning in (or would like a refresher!) and would like a very brief synopsis of why we are doing this walk and who is it benefitting, here it goes…

The Happy Heart Walk started last year on behalf of my son, Henry, who is presently a delightful, happy, and sweet 21 month old. At 3 months of age, after not growing very much at all and a series of tests, he was admitted to Children's Hospital Oakland. Within 24 hours of being admitted, he had a confirmed diagnosis of severe Dilated Cardiomyopathy, meaning that the left ventricle of his heart was extremely enlarged, causing his heart to function at less than 20% of what it should be.  We spent the next 5 weeks in the Pediatric ICU trying to get Henry's heart function stable and strong enough to come off of his intravenous medications and on to oral ones so that we could bring him back home. After 5 weeks inpatient, we were able to come home and have been trying to have as "normal" of a life as possible. With the exception of another hospital stay last January, Henry has been relatively stable and healthy. Just before Henry's first birthday, we received results back from genetic testing that revealed why Henry had Dilated Cardiomyopathy and why it hadn't healed. He has a very rare genetic disorder called Barth Syndrome. Barth Syndrome primarily affects males, with fewer than 500 cases reported world-wide, although many more probably exist but are undiagnosed. The cardinal characteristics of this multi-system disorder include cardiomyopathy, neutropenia (low white blood cells that can make one prone to infection), muscle weakness, exercise intolerance, growth delay, and energy deficiency. Historically, boys died of heart failure or infection before three years of age, but today with improved diagnosis and management, hopefully Henry's survival rate will be much brighter.

The past year and half has been quite a journey, definitely the most trying time in our lives, but also a time of feeling very loved and supported by our family, friends, and community. Without this support group, I'm not sure how our family would be surviving! We are so thankful to live in this area, surrounded by the best medical care possible, and surrounded by very compassionate people. Several times, we have been stopped on the street and told how much Henry has been thought about and prayed for by complete strangers! He is pretty easy to recognize, with his huge brown eyes, contagious smile, and, unfortunately, a yellow NG feeding tube coming out of his nose!

Last February, we hosted The 1st Annual Happy Heart Walk at the Lafayette Reservoir for our extended family and close friends. The purpose was to honor Henry and to promote awareness of Pediatric Cardiomyopathy. It was great! We had a fabulous turnout, and it was sweet time to come together and show our support of all the kiddos who are affected by this scary and awful disease. This year, we'd like to do the same, but bigger and better. 

The Happy Heart Walk this year will raise funds to support the Barth Syndrome Foundation and the good work and research they are doing to help find a cure for the boys currently suffering and the ones to come. The Foundation has been extremely helpful to us in the past year, and is profound at funding important research to help us all better understand this disease. And since Barth Syndrome is so rare and not huge on the radar, it is even more important that we do all that we can do to help them, which ultimately ends up helping Henry and other boys in the same situation. 

The Happy Heart Walk received it's name from a Bible verse that a dear friend sent me when Henry was first diagnosed:

"A happy heart makes the face cheerful..." Proverbs 15:13

What this has meant to us is that even though Henry's heart has been "sick", it has still been happy. And that has always shown on his face, through all that he has been through. His health (and circumstance) has not determined his happiness, and that is what we have strived to implement in our own lives. 

Again, we are so thankful for each of you...

T-shirt purchases and cash donations will not be tax deductible. If you wish to make a tax-deductible donation, please do so by a check made out to the Barth Syndrome Foundation that can be given to us, or mailed directly to the Foundation. You can also donate online on the Foundation's website:

barthsyndrome.org

Barth Syndrome Foundation

PO Box 582

Gretna, NE 68028 

Hope to see you at the walk!