Hayden's Heart: February 2015

Helping Hearts 5K in Williamsport PA!

18 February 2015

Hayden's Heart is honored and thrilled to work with two other heart organizations this Spring for our second annual 5K Walk in Williamsport PA!!
Last year we hosted this event and honored Nolan Heart of Steel- he had at the time just received a heart transplant and was in the recovery stages. This year, he is thriving at home and Team Nolan is in the early stages of being formed! We will be working with them and with Ellie's Heart Foundation- Ellie passed away a few months before Hayden and we have always had a special place for her and her family in our hearts.
Coming together with these other two heart organizations is so meaningful- I love the unity it shows for Heart Awareness- both CHD and Cardiomyapathy. We hope that by coming together we can reach our common goal of raising awareness and funds for a fellow local heart family!
This year we will be honoring Oskar Schmalhofer and family who reside in Montoursville, PA. You can read more about Oskar and his journey here.

Event Details:
Date: Saturday April 25, 2015
Time: Registration- 9:30am
Walk Begins- 11:00am
Place: Williamsport High School Track/Football Field
Cost: $20 donation

The day will be filled with loads of fun activities for the kids, great food, participant bags, raffles, and of course- a lot of love and support for Hayden, Ellie, Nolan and Oskar.

REGISTER HERE

If you would like information on how to sponsor this event, please email ady.dorsett@haydensheart.org

Ellie's Heart Foundation

Nolan Heart of Steel

gift card drive for xavier ross + family

17 February 2015

Almost 5 months ago Xavier Ross went into CHOP for his Fontan, the third and often final open heart surgery to repair a Hypoplastic Left Heart. Typically with this surgery, the family prepares to be in the hospital for a week- and in some cases a month- while their child recovers, drains off extra fluid-etc. But while our buddy and warrior Xavier was recovering, something tragic happened. Something so rare that people who have been in the field for 15+ years have never even seen. Xavier's stitch from his Fontan burst and sent him into immediate cardiac arrest, internally bleeding (which led to externally bleeding) everywhere. A miracle happened that day when his surgeon was just a few feet away and was able to stitch his heart back up and save his life right there in his bed in the CICU. But there was of course damage that had already been done. Xavier's brain had already lost oxygen and his body went through such trauma that he is still, 5 months later, recovering on that same CICU floor. They are working hard on getting Xavier over to the rehabilitation side of CHOP and hope that transfer happens in the next month. But nothing is definite. Once there, it is projected that he will need 4-6 months in rehab- again nothing is definite. What is known is this Fontan- this possible at most month stay in the hospital that they initially prepared for has- in literally the blink of an eye- turned into what may be an entire year- or longer...

Jackie and Nate have been blessed with wonderful supportive parents who have eased the burden of worrying about their one year old sweet daughter Elliot. They know she is being cared for and loved on in their absence. They are able to take turns at the hospital- making sure Xavier is not left alone- and every day one of them tries to be home for a little bit to be with Elliot too. Their lives, like all of us, revolve around the well being of their children. Unfortunately, the stress of money has again taken its toll on them and simple things like gas to and from CHOP, diapers for Elliott, groceries, etc are becoming a burden and a stress that is just not needed right now.

I would like to see what we can all do together for the rest of HEART MONTH into March to help this family who is trying the best they can to keep it all together.
I am asking that you give a little heart and a little love- and send a little gift card to help ease these burdens. The best kind of gift cards to help their needs right now are Visa gift cards, CVS, Target, Giant and ACME. Any amount is a huge help. Every little bit adds up.

Please mail all gift cards to:
Hayden's Heart
c/o Ross Family
118 Bathurst Ave
North Arlington NJ 07031

If you include your name and address, we will mail you an Xavier support bracelet and enter your name into a raffle! For every ten cards we receive, we will add another prize to the raffle and once the drive is over, we will pull winners! Starts TODAY until March 17th!!

**Read more about Xavier and his journey on his Facebook page and blog. **

final hours for sevenly!!!

15 February 2015

Rob and I are humbled by the overwhelming support our Sevenly campaign has received the past 6 days! When we were approached about this partnership with Sevenly, we weren't sure we would be able raise the amount of money the other organizations they work with have. Some of their campaigns feature charities with a Facebook following of 400,000 or more. Going into this week, we had approximately 5,500 followers on Facebook- but our followers are so much more than just that. They are supporters- you are supporters- who have over the past month, year, 3 years- however long you have known him- have loved Hayden, have shown endless support and have time and time again gone above and beyond anything I could have ever possibly imagined. And so here we are- just about 13 hours away from the close of our 7-day campaign, and you've already done it again. You've once again overwhelmingly amazed me with your support and love for Hayden and for his legacy.

If you haven't had a chance yet, please share our campaign and purchase a shirt designed with Hayden's Heart and CHD in mind. Help us continue to raise awareness for CHD- the #1 cause of infant death in the United States. With every shirt purchased, Hayden's Heart will be able to help a heart family on their journey- wherever they may be.
I cannot wait to see how this all ends tomorrow, Monday at 1:00pm EST. Thank you to all who have taken part in such a meaningful and special event for our foundation! We are grateful....

Here is the link to our campaign!!
www.sevenly.org/haydensheart

sevenly campaigns for hayden's heart amidst chd awareness week!!!

11 February 2015

WOW!! Such a huge week for Hayden's Heart and the CHD community!
Hayden's Heart is beyond honored to be chosen by Sevenly as their featured charity for this week- CHD awareness week!!
Sevenly has designed a line of clothing with Hayden's Heart and all heart kids in mind that with each purchase this week, benefits Hayden's Heart! For every shirt sold, Sevenly will donate $7 to Hayden's Heart!! By supporting this campaign you are not only helping us raise awareness for the CHD community, but also enabling Hayden's Heart to touch more lives through our care packages, monetary donations, hotel stays and so much more.
Hayden's Heart is completely run by volunteers so every single dollar donated impacts a heart family in need. Please help us reach our goal of $7000 and share this campaign!!
www.sevenly.org/haydensheart

Below are the shirts Sevenly designed for our campaign. Their inspiration comes from our website, our blog, facebook, and overall research on CHD and heart kids as a whole.

I had an opportunity to speak with one of the designers and got some insight on where they came up with these unique and abstract ways of spreading awareness and love for CHD and Hayden's Heart.

The Heart Dreamcatcher:

Every child has dreams- dreams of what they want to be when they grow up, who they want to meet, what they will get for Christmas- childrens' dreams are endless and every child deserves the chance to dream- even babies and children with Congenital Heart Defects. These children are fighting a life long battle and even though at times as parents we wonder how long they will be able to fight- they deserve to dream through it. They deserve to live a life- no matter how long it is- that is full of dreams- of if they will be a fire fighter or a ninja turtle when they grow up- dreams of water parks and sandcastles over summer vacation, dreams of the princesses and video games that Santa will bring them for Christmas this year. This shirt represents all of the heart babies and children fighting hard through it all...and still being able to dream....

'Courage is Already in You'- When reading about Hayden and other heart warriors- a common phrase or nickname heard is 'warrior'. Our babies and children effected with a CHD are literally fighting a battle for their life on sometimes a daily basis. They are heart warriors and anyone who has seen one fight will tell you they give all they have and then some to win their battle- to be a warrior and beat the CHD odds. They need the courage in them to get there- and oh it is so there with these babies and children. 'the courage is already in you'...way more than any of us heart parents ever wanted you to need it- you already have it in you...

'LOVE'- there are two shirts labeled with LOVE for our campaign- but for several reasons. First, it is CHD Awareness week and Heart Awareness Month and when you think of a heart, you think of LOVE. And its Valentines Day! LOVE is all over that Holiday!

But my favorite reasons for the shirts saying LOVE go deeper than either of those two meanings. If you've ever had the pleasure of meeting Hayden- or any other heart child for that matter- you can see the LOVE in their face- in their eyes and smile. These kids LOVE life like nothing I have ever seen. Most of them do not have what we would call an easy life- but they really don't know the difference. They don't know that it's not the norm to have a huge scar down your chest- or a feeding tube through their stomach- or a nurse poking at them 5+ times to try and draw some blood. What they do know is that they are surrounded by such intense LOVE that they exude it. You cant help but fall in LOVE with a heart baby- its just something about those kiddos that just captivates you. And I know with most of you, I am preaching to the choir- as so many of you never even met our Hayden- but you too fell in LOVE with that smile, those eyes- that face- who just found a way to LOVE this life he was living- and I know its because he felt the LOVE that was being sent to him from all over this world. Thank you for loving him...

hayden's heart + sevenly

09 February 2015

Hayden's Heart was chosen to partner with a company called Sevenly!!! If you are unaware of who they are and what they do, you can follow them on facebook or read more about them on their website. In short, this company designs apparel for a chosen charity that they feature for seven days and for every item purchased during those seven days, they donate $7 to the charity. We have been in talks with them for a few months and typically they choose organizations that are much larger than we currently are, but like all of you, also fell in love with Hayden and his story and our mission to help other heart families like our own. I am so pleased and honored to announce that Sevenly is campaigning for us this week! Feb 9-15- which is also in the midst of Heart Awareness week! Such a PERFECT fit!!!

Please take a moment to check out the designs they have created for us and for Heart Awareness and consider purchasing these once in a lifetime designs (only available this week!!) to support Hayden's Heart and raise CHD awareness! Please also share this campaign with your friends and family- the more we share, the more successful this will be! Let's show Sevenly they made the right choice in partnering with us and show them how dedicated Hayden's followers are!

Below is the shirts Sevenly designed for our campaign. Their inspiration comes from our website, our blog, facebook, and overall research on CHD and heart kids as a whole.

I had an opportunity to speak with one of the designers and got some insight on where they came up with these unique and abstract ways of spreading awareness and love for CHD and Hayden's Heart.

The Heart Dreamcatcher:

Please visit www.sevenly.org/haydensheart to purchase a shirt and support this cause! There are several different shirt styles for each design!

We'd love to hear from you once you receive it- post a photo to our timeline or instagram #haydensheart