FIGHTING THE HEART WAR WITH LOVE.

Hayden's Heart Monthly Beat- JUNE

01 June 2017


Hayden’s Heart Monthly Beat

JUNE


SUMMER GOLF OUTINGS! 

New Jersey


This event is almost here- JUNE 9th!! We have just a few spots left for our HEART STRONG NJ outing- register on our website under events!

Pennsylvania 


On Friday, July 28, we are hosting our 5th annual golf tournament to honor Jude Solderich from Allentown, PA.

If you would like information on how to sponsor this event, or register as a golfer, please visit our website or email Rebecca.perrotto@haydensheart.org

 

Something BIG is happening with Hayden’s House- stay tuned!!!!! 

 



Hayden’s Holiday was formed this year as a way to give recently grieving families a chance to escape reality with the ones they love the most. We are sending six grieving heart families on a mini vacation this year. Our first family to go on their holiday lost their heart warrior in March of 2016. They spent two nights and three days with their lego-loving 4 year old in LegoLand, California and saw signs from their loved one often throughout their stay.

‘My son and I had such a great bonding time and a little step away from reality on our Hayden’s Heart vacation. We can’t thank you enough for all you did for us. Thank you! We are so grateful!’ – Heather, heart angel mama to Aiden



Contact us:

CEO- Ady Dorsett
Ady.dorsett@haydensheart.org
www.haydensheart.org
www.haydenshouse.org
118 Bathurst Ave | North Arlington | New Jersey | 07031


Pennsylvania's 5th Annual Golf Outing- MEET THE WARRIOR!

23 May 2017

 On Friday, July 28, 2017 Hayden’s Heart Inc. is hosting its 5th annual Golf Tournament at White Deer Golf Course to honor Jude Solderich from Allentown, PA.

Jude was born in July 2016 with a heart defect and was placed on the transplant list at only three and a half months old. It is with your support and donations that help us help families like Jude.

At the event, we will have prizes for the 1st, 2nd and 3rd place foursomes, as well as door prizes, raffles and contests throughout the event.

Breakfast, drinks and a luncheon following the tournament is included in the price. Please see flyer or website for all event details and to register for this event! Space is limited!
(www.haydensheart.org)

If you would like to sponsor this event, or for any questions, please email rebecca.perrotto@haydensheart.org


MEET JUDE


On July 25, 2015 our miracle was born. When Jude was born the amazing doctors at Children's Hospital of Philadelphia allowed Jude the time to show him how his heart could function. At 5 days old he had his first catheterization. This viewed how his aortic arch looked and opened his left ventricle to start working better. At 10 days old he had open heart surgery. After 3 weeks in the hospital. We took home our healthy baby.

October 25 Jude was breathing fast and admitted to Lehigh Valley Children's Hospital believe to have a common cold. On November 8 Jude was sent to CHOP by helicopter. He was in severe heart failure. He had another catheterization to open a blockage in his aorta. Unfortunately it didn't make a difference. 5 days later they tried another catheterization without change. December 19 we made the decision no parents wants to make, we listed him for a heart transplant. After 74 days of living at The Ronald McDonald House and having our family split up, the end of January we went home with a continuous iv medication. During our many trips back to CHOP his heart was showing positive change, which was not at all expected. March of 2016, Jude returned to CHOP for 5 days and he was weaned off is life sustaining iv medication. His heart has done so well that in December 2016, Jude came off the transplant wait list!! We don't know what the future holds for him. We do know there will be other catheterization and a valve replacement as well as a life time of follow up visits in Philadelphia. Through it all, he is such an amazingly strong and happy person who has showed us that miracles do happen.


Hayden's Heart Monthly Beat- MAY

30 April 2017


Hayden’s Heart Monthly Beat

MAY 


SUMMER GOLF OUTINGS!

New Jersey



Join us Friday June 9th for our ‘Heart Strong’ outing where we will honor heart warrior Shea Oldenburger!

Registration is limited- please visit our website. Sponsorships are also available on our website. Looking forward to a beautiful and successful day!


Pennsylvania 

 

On Friday, July 28, we are hosting our 5th annual golf tournament to honor Jude Solderich from Allentown, PA.

If you would like information on how to sponsor this event, or register as a golfer, please visit our website or email Rebecca.perrotto@haydensheart.org



Hayden's House of Healing - Update


Since launching our project for ‘Hayden’s House of Healing’, we have had great progress in some areas, and setbacks in others. If you haven’t visited our website for Hayden’s House, please check it out- we would love to hear your feedback! www.haydenshouse.org

Ady and Mandy (a fellow Hayden’s House board member) visited Faith’s Lodge in April. Faith’s Lodge is a house for bereaved families located in Wisconsin- doing essentially what we hope to achieve. Their CEO spent a day with us- touring the facility followed by a three-hour lunch where she gave us so much insight to this type of project. And while the visit was both emotional and overwhelming, we left with fresh ideas and are working towards a plan of attack that we look forward to sharing with you all soon! STAY TUNED!!

We are in the fundraising stages for the house - if you or anyone you know is interested in donating or hosting their own fundraiser to benefit this project, please email ady.dorsett@haydensheart.org for more information!



Save the Date! 

 


Please SAVE THE DATE for our Heart to Heart Gala on Saturday November 18th at Herman and Luther’s in Montoursville, Pennsylvania. This formal event promises to be a night full of dancing, dining, drinks and entertainment- as well as auction items and raffles to helping our fundraising efforts. This event is honoring heart warrior Harper Renshaw, of Conshohocken, Pa.

Please visit our website under the events tab for more information! If you wish to receive a formal invitation to this event, please email: tatum.heiser@haydensheart.org



Contact us:

CEO- Ady Dorsett
Ady.dorsett@haydensheart.org
www.haydensheart.org
www.haydenshouse.org

118 Bathurst Ave | North Arlington | New Jersey | 07031

Heart Strong NJ Golf Outing- meet the warrior!

28 April 2017

Heart Strong Golf Outing!

On Friday, June 9th 2017, Hayden’s Heart + Madison Strong will join forces to host our 4th Annual Golf Outing at Preakness Valley Golf Course, appropriately titled ‘Heart Strong’.

Together we will honor Shea Oldenburger, a toddler from Washington Township, NJ, who is fighting a multitude of Congenital Heart Defects. (Read his story below)

At the event, we will have prizes for the 1st, 2nd and 3rd place foursomes, as well as door prizes, raffles and contests throughout the event.

Breakfast, drinks and a luncheon following the tournament is included in the price.

Please see flyer or website for all event details and to register for this event! - space is limited! If you would like to sponsor this event, please email ady.dorsett@haydensheart.org 


Meet Shea


My husband and I were so excited to find out we were having our first baby. We went for my 20 week ultrasound and after lots of moving and readjusting, the ultrasound technician went to get the doctor. After a 30 minute wait, the doctor returned and informed us that our baby had a complex series of heart defects. We rushed to a pediatric cardiologist who confirmed the diagnosis.

The next day we went to Morgan Stanley Children’s Hospital at Columbia NYP where we began our heart journey. Shea Noah was born on February 27, 2016 with hypoplastic right ventricle and tricuspid valve, aortic atresia, VSD, and interrupted IVC. He had his first open heart surgery when he was four days old and did so well in recovery that he came home after only 16 days in the NICU.

Shea was monitored very closely for the next 5 weeks, until he displayed lower oxygen levels and was eating less. Due to the quick intervention at Columbia NYP, it was determined that his aortic arch repair was clogged with scar tissue, reducing his aorta to the size of a pin hole and barely allowing blood to pass. He had a heart catheterization the day after his 2-month birthday, where the doctor inflated a balloon in his aorta to stretch it out and allow more blood to pass. This fix worked for 3 more months.

On Shea’s 5-month birthday he had his second open heart surgery. Although he recovered quickly, this surgery came with many complications. Shea’s vocal cord needed to be moved during surgery because of it’s proximity to the heart, resulting in vocal cord paralysis. He developed a blood clot from the central IV line that was inserted to administer medications. He got a Strep blood infection, and a Staph wound infection. All of these complications resolved themselves, and now Shea is completely recovered from this surgery!

Shea needs one more open heart surgery when he is around 4 years old. He is now thriving due to the incredible care from Morgan Stanley Children’s Hospital at Columbia NYP. He loves to swing his baseball bat and play with his puppy. This journey hasn’t been easy, but we wouldn’t trade it for anything in the world.


 

Grief and Faith...

06 April 2017


Before I got pregnant with Hayden I lived a pretty standard life in faith- I was raised a Christian, went to church, believed in prayer and that God was in charge of all things in this life. I believed and lived by the quote ‘Everything happens for a reason’ and believed God was behind all reasons.

The day Hayden was diagnosed with Hypo-plastic Left Heart Syndrome, my faith changed. I dived in deeper- begged and pleaded for prayers from anyone who was willing around the world. I set up a public Facebook page called ‘Prayer Page for Baby Hayden’ and invited all to join and share in helping us pray for a miracle. The day he died he had over 22,000 followers- all with intentions of praying for him and his fight for life.

I truly believed through Hayden’s life that prayer was going to be what saved him and what had previously been what saved him through all of his near-death experiences. The day he died, I felt confused, cheated, betrayed. 22,000 + people were praying for him- praying for him to come back to us- for his brain function to return- for a second, even third chance at life. I couldn’t figure out why if all of these people were praying to God for a miracle, why didn’t it happen? Why did he die? What did I do that was so wrong in my life to deserve this? Was I being punished? Why didn’t we get our miracle?  I’ve never pretended to be perfect- I’ve made plenty of mistakes- but thought overall I was a pretty decent person- caring, loving, with good intentions. Did I personally not pray enough? Not go to church enough? I was shattered- and I was ANGRY with God. From the day he died, I refused to pray. Refused. What was the point? He wasn’t hearing me anyways.

I went through about three years of feeling this way, but through it all knew that the ill feelings I was harboring towards God were also hindering me in my path towards healing. I will never forget our first retreat- the fall of 2015- three years into my grief. We spoke about our biggest relationship struggles and mine was with God, as were several other mothers. I said I wondered where God was when Hayden died- why he wasn’t with me- why he didn’t save him and give us our miracle. I remember one mother spoke some time after I did and I will never forget what she said. She said she knew God was with her. That when her daughter died, she knew he wept with her. He was just as sad as she was that her daughter had died. And although parts of that still do not make sense to me, it hit me. It hit me hard. I thought about that comment for weeks- months. I couldn’t get it out of my head. Maybe God wasn’t punishing me. Maybe he WAS sad Hayden had died. Maybe he was there all along. That New Years my resolution was to try to go to church again. Try to pray a little again- and maybe let God in a little. I felt like if this mother who also lost her child was able to remain trusting in God and have faith, maybe I could too.

It has been just over a year since I had that conversation at the first retreat and I am so thankful to say that so much of my outlook has changed. I am still so confused and may never understand why God didn’t give us our miracle and the act of prayer is often still confusing but what I do know is that God loves me- God didn’t punish me. He doesn’t work like that. He did take Hayden for reasons I don’t know that I will ever understand, but he also gave me so much and continues to- all I have to do is allow myself an opportunity to see it and accept it. He gave me 5 months and 4 days with that sweet boy- the same boy doctors were urging me to terminate at 21 weeks gestation when he was diagnosed. He gave Hayden to ME- he gave me the honor of being his mommy- to love on him and for him to love me. He gave me a sunshine baby before Hayden to make me get out of bed every day after Hayden was gone. He gave me two of the happiest, most loving rainbows on the planet and he helped me and continues to help me build a legacy for my son that I could not be more proud of.

So, I no longer believe everything happens for a reason.  But I do believe that people come into our lives for a reason. I do believe that good can come from heartache. I do believe that God has blessed me, and continues to, in several areas of my life. Some days it takes great effort, but I choose to focus on the good that He brings to my life and the good that Hayden has brought to my life- both while he was here and now that he is gone.

This past August marked four years without Hayden and while I feel I still have a long way to go in restoring my faith in God, I’ve also come a long way and I will continue to work on it because if nothing else, I know that God holds the key to my eternity with my son.

For those of you struggling with your faith since your loss, hang in there. Don’t give up.  It took time for me to look at my life from a different perspective. It took time for me to realize how blessed I was, even though I had experienced the greatest heartache ever known. Maybe your blessings come in different forms- maybe you haven’t even realized what they are yet- but they are there and when the time is right, I promise you they will become crystal clear.

Hayden's Heart Monthly Beat- APRIL

01 April 2017

Hayden's Heart Monthly Beat

APRIL

 

Hayden's Heart 5th Annual 5K Re-cap

What a great turnout for our 5th annual 5K Birthday Bash for Hayden- despite the freezing cold! We were humbled by yet again a packed park full of sponsors, vendors, food, kid activities, runners, walkers, strollers, high school teams, family, friends, heart warriors, heart mamas- all there supporting our mission- Hayden's legacy.

Because of the cold, we had less people register the day of the event than years prior, but regardless, there were still over 500 participants, over 50 kids in the Fun Run, and around 650 people braving the cold, celebrating a very special boy.

In addition to celebrating Hayden's 5th birthday, we also honored heart warrior sisters- 4 year old Aylin and 8 month old Isabella Conil- of North Bergen, New Jersey- both with a CHD called Tetralogy of Fallot. We were honored to have their parents Julio and Yenni participating and expressing their gratitude for the support given and we hope the proceeds from the event will assist them in their journey!

Thank you again to all who played a part in making this event amazing!!

And…

SAVE THE DATE for our 6th annual- March 24, 2018!!

Pictures from PhotoSesh

Video from Real Arch Videography

            

SAVE THE DATE!!! 

  
Our New Jersey and Pennsylvania Golf Outings for this summer are posted on the website! Several sponsorships are available and registration for golfers has also begun. Both tournaments have limited space for participants and sponsors.


New Jersey

On June 9th, the New Jersey tournament is teaming up with ‘Madison Strong’ - coined after a brave baby girl who was born with HRHS- Hypo-plastic Right Heart Syndrome- which is even more rare than HLHS. Madison Cohen was placed on the transplant list at just one month old but tragically passed away at two months old while waiting for her new heart. Madison’s parents, Matt and Stephanie Cohen, reside in Hoboken New Jersey. We are honored to team up with this incredible family and honor Hayden and Madison, as well as heart warrior Shea Oldenburger from Washington Township, NJ. Please check out our website and email ady.dorsett@haydensheart.org if you have any questions!



Pennsylvania

On Friday, July 28, we are hosting our 5th annual Golf Tournament at White Deer Golf Course to honor Jude Solderich from Allentown, PA. Jude was born in July 2016 with a heart defect and was placed on the transplant list at only three and a half months old. It is with your support and donations that help us help families like Jude.

If you would like information on how to sponsor this event, or register as a golfer, please visit our website www.haydensheart.org, or email Rebecca.perrotto@haydensheart.org
 



2017 5K success!!!

24 March 2017



I woke up on the morning of March 18th feeling spent. Feeling drained and unmotivated. 'Celebrating' Hayden's 5th birthday the week before had taken so much out of me emotionally. I knew 5 was going to be hard- so hard- and the month of March felt like it was swallowing me whole and while I was trying hard to get out of my funk, I woke up the morning of his 5K feeling like I had failed at my attempts.

I showed up at the park where 20-some people had already been setting up for over an hour in the freezing cold. An event for my foundation- for my son. And all I wanted to do was sit in my car and cry. Feeling 'done' with hosting events in his memory, wishing with all I had that he was with me- that I could stop telling people he died- that I would be able to tell them he was a spunky 5 year old who was beating the odds.


His birthday was taking me under- my grief was winning. 


I got out of my car and started walking around the park in what felt like a huge fog. I still felt like running back inside my car and hiding. But as I slowly started to take it all in- started looking around at who was there- watching all these people moving around the park like a little 5K army- was humbling and moving. It didn't take me long to SNAP out of it- to realize that yes, Hayden died. Yes, I want him back more than I want breath in my own lungs- but look at the GOOD that he has left behind. Look at all of these people out here on a freezing cold Saturday morning setting up for hopefully a packed house in just a couple hours.


And despite the cold- thats what it was- a packed parking lot full of sponsors, vendors, food, kid activities, runners, walkers, strollers, high school teams, family, friends, heart warriors, heart mamas- all there supporting our mission- Hayden's legacy. Because of the cold, we had less people register the day of the event than years prior, but despite that, there were still over 500 participants, over 50 kids in the Fun Run, and around 650 people braving the cold, celebrating a very special boy.

In addition to celebrating Hayden's 5th birthday, we also honored heart warrior sisters- 4 year old Aylin and 8 month old Isabella Conil- of North Bergen, New Jersey- both with a CHD called Tetrology of Fallot. We were honored to have their parents Julio and Yenni participating and expressing their gratitude for the support given and we hope the proceeds from the event will assist them in their journey!


I wish I could find a way to express how grateful I am to everyone who made Saturday the success it was. When I look back on March, I will of course know that it is another birthday we celebrated without him, but because of all of you, its so much more than that.

It's about the committee of volunteers who spent over 6 months planning and preparing for one day. It's about our neighbors who year after year help set up the event, man the grill, and stick around to clean up. It's about my family and best friends who travel every year to be there with me to celebrate Hayden and his legacy. It's about Pat from Home Depot who has been with us all 5 years and his smile brings a smile to my face no matter what I have going on inside of me. It's about tons of DONATED FOOD from Blimpie, Shoprite, Nonna Lisa Pizza, Dunkin Donuts, Brothers Bakery, Villa Italia, and much more. Its about the Fun Bus calling me a month before the event and telling me they read what we are all about and want to fully DONATE their bus for the day because they are so touched by what we are doing- and Party Magic being there for the third year in a row, donating their time for the same exact reason. It's about those delicious mini cupcakes all the way from SugarBabe in Bethlehem PA.  Its about THREE EVENT SPONSORS!!! and all the other companies and businesses who felt our mission was worthy of a generous donation and of their support.


Its about high school kids running, walking, volunteering- just being there helping us build a future who knows Hayden's Heart and will keep his legacy going for years to come. 



It's about having memories from this event to look back on and thanks to PhotoSesh and Real Arch Photography, we will have plenty. It's about those Star Wars guys from a Galazy far far away... It's about the heart community coming together- supporting one another- raising awareness for our children and for Congenital Heart Defects. It's about all of you who took time out of YOUR day to honor Hayden- raise funds and awareness for our mission and for showing us year after year that even though he is not with us, he will live on forever in your hearts.

Please know that there is no greater gift you can give a bereaved family than that....


Photo credit: PhotoSesh 

To view more pictures from this years 5K, please CLICK HERE.

Visit YouTube to see a video on the 5K- generously created and donated by Real Arch Videography

Surviving Childloss Together

03 March 2017

Men are from Mars.
Women are from Venus.

I've heard that saying all throughout my life and sure, I knew in the first few years of marriage with my husband that we were different breeds. Multi tasking is a trait most women excel in- while most men can't seem to find a way to wash dishes and hold a conversation at the same time. Most women are organizers –or at least strive to be in some ways- we do and want things done in a certain way. While men- they just want to get the job done, and specifics as to how to get it done aren’t always as important. There is nothing wrong with this- and this is in no way a man- bashing blog, I am simply pointing out some ways that I have found my husband and I – and most couples- are very different.

However, now that we lost a child together and are trying to maneuver through that tragedy, I can fully say that yes- we are from different planets. For me, the first sign of this was just about 10 hours after Hayden had died. We said our final goodbyes to Hayden and were leaving the hospital to go home without him in our arms for the very first time. Just getting me out of that hospital was a struggle in itself. But the two-hour car ride home- pure torture.

It took me over 30 minutes in the car to finally calm my outward sobbing and I sat there in silence next to my husband trying to find a way to catch my breath for the first time in quite a few hours. I remember literally telling myself to take a deep breath- open up your lungs and breathe deep. Just as I was doing that my husband looked over at me from the driver side-, which that alone still shocks me - that he was able to make that trip home- but anyways he looked over at me and said ‘So, I was thinking we could have him cremated so you can put his ashes into a necklace and always have him with you.’

Now looking back on this 4 years later, it is truly so sweet and thoughtful. But at the time, I was literally trying to retrain myself how to breathe after the loss of my son. I remembered slowly moving my head to look at him and whispered to him ‘I'm just trying to figure out how to fully breathe without my son in my arms. I don't know what you're talking about right now.‘

It's been so long since that moment happened that I feel silly even asking if it offended him at the time but I truly just felt at that moment that we were from different planets, and may have actually looked at him as if he had two heads- or some alien-like feature.

Surviving a marriage after the loss of your child is not easy. However, most seem to find a way to do it. Statistic show that 16% of married couples divorce after the loss of a child. And while that statistic isn't as large as I thought it would be, it is still upsetting and scary to think that I -or one of my angel mom friends - could fall into that category.

I imagine most grieving couples agree it isn’t easy. For me, the first few months to a year were pretty difficult to navigate through not only my loss, but also now living with a man who fathered my deceased child, yet somehow seemed to grieve completely different than I was. I would often internally remind myself that yes we did have the same loss - and remind myself that although I felt it, I wasn't really alone. That he had lost the same as I did.

I remember a few months after Hayden died I was in my kitchen washing dishes probably crying like I often did in that space. A song came on that Rob must have liked because the next thing I know, he was in the kitchen singing along happy as can be. And I think I actually looked at him and said ‘How are you singing right now? How are your insides so joyful that you could actually be singing right now?’ I probably should've kept that thought to myself but my insides were still so damaged and so broken that the thought of actually being so joyful and singing along to one of my favorite songs just felt so foreign to me and I couldn't believe that the person standing next to me who experienced the exact same loss that I had was able to do that.

From two different planets.

I cried all the time, he rarely- if ever- did. I went to the cemetery all the time the first year or so- he rarely did. To this day I wake up every holiday with Hayden’s absence on my mind- wondering how to get through it and trying to put a smile on my face for my surviving children, he often questions ‘What's the matter?’

Again, I am in no way bashing my husband or any other father that grieves this way. I am just simply stating that we are very different. And navigating through the loss of your child with your spouse who grieves completely different than you is difficult. It doesn't mean my husband loves him any less. It doesn't mean that he's not sad. It just means that we choose to express it very differently. I've often asked him ‘Why don't you cry? Why don't you seem sad? Why does it feel like you've moved on?’ I know he feels like he needed to be strong for me every single second of every day. Even though I would often tell him that if there's ever a time for a married couple to completely lose their shit together, this would be the time.

Rob and I had always been such a great team when it came to Hayden's care. And we continue that through with his legacy. I distinctly remember the doctors and nurses telling us the days he was dying what a great team we were. We literally took turns crying. I would stand over Hayden and have my moments of sadness while Rob would either rub my back or walk away and give me space. And then when I'd gotten myself together he’d take his turn. We did that for three days straight. But, for whatever reason, once he died, I guess maybe Rob just saw me as even weaker and just felt the need to be stronger.

Now that we are 4 1/2 years into our loss, I know Hayden's death will not tear us apart. We've made it through- but it wasn't easy. Very often friends would say to me how impressed they were with how well I was dealing with our differences in our grief. How they don't know if they would be able to handle grieving alongside their husband so differently. For me, it was just about respecting each other. Even though we grieve differently, I respected his path. And he respected mine. That's not to say it wasn't hard. That's not to say there weren’t a lot of times where I questioned his grief. And not to be judgmental, just to understand. I just really didn't understand how our loss was the same but so different. Maybe he felt and feels the same way. All I know is that I'm proud of us for not only surviving the loss of a child but for surviving our differences in grief. For respecting each other and knowing that we were doing what we individually had to to get through it. We may not understand what the other is thinking, I may never figure out why he doesn’t express his grief in the same ways I do- but we make a great team- same planet or not.

- Ady (Hayden’s mommy)

 

I think the husband/dad role in a relationship when dealing with grief is far different than that of the wife/mother. These thoughts were formed based on my own experience as well as the experiences of some other men in the same situation. It would be very easy for someone to just say that men hide their grief because they inherently don’t enjoy talking about their feelings. While this may be partially true, I think there is more to it than that. When you lose a child, there is so much grief and sadness that it’s hard to even put into words and if you have not gone through it, honestly you can’t really relate. It’s nothing like losing a relative or someone else you know. As a dad who has lost a child, I don’t think I can even fully understand what my wife was feeling in our early stages of grief. She was the one who was pregnant with him, delivered him, and was with him 98% of her time. So early on after Hayden passed away, if there was a time when Ady seemed happy or in a good mood, there was no way I was going to upset that and possibly bring up my grief. Other dads have brought up this same idea. It’s not the men are not grieving, although sometimes it could seem that way, but more so that we don’t want to put our wives right back into intense grief because we know that’s where it will lead. If I needed some time to be upset, I’d do it in private, not because I didn’t want to show my feelings, but rather I was afraid of what those feelings would trigger for Ady. It’s not that I was trying to be the “strong” one. What I was trying to do was when I did see glimpses of Ady not in deep grief,  I just wanted to hold onto that.

- Rob (Hayden’s daddy)


Hayden's Heart Monthly Beat- MARCH

01 March 2017




Hayden’s Heart Monthly Beat

MARCH

Hayden’s Heart 5th Annual 5K

Saturday March 18th



We will be celebrating Hayden’s 5th Birthday in SUPERHERO style! Please join us and come dressed as your favorite superhero - or bring your own superhero squad!

This event is family and pet friendly - with face painting, arts and crafts, and a Fun Bus for the kids, as well as food trucks, grilled goodies, and a special birthday tribute to Hayden with bubbles, cupcakes and balloons!

Participants can walk, run or stroll in the 5K – and kids 12 and under are FREE and eligible for the kids Fun Run starting at 10:30am.

First 100 to cross the 5K finish line will receive a medal for their achievements!

Register using the link below:

https://raceroster.com/events/2017/10556/haydens-heart-5th-annual-5k

Some sponsorship options and team discount rates still available- please email rob.dorsett@haydensheart.org for more information!


Hayden’s Favorite Things Care Packages

Every March for the past 5 years, we have delivered ‘Hayden’s Favorite Things’ to Pediatric cardiac hospitals on the east coast. This year we are beyond grateful to have gotten ALL items donated for these packages!! THANK YOU to the following companies for making these very generous and much appreciated donations. 

We are also thrilled to once again have our local girl scouts troops #95952 + #97108 from North Arlington, NJ help us compile the bags for these special warriors! 

Because of the generosity of these companies and the volunteer efforts of the girl scouts, we will be sending 75 care packages out to 5 difference east coast hospitals! (Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Columbia New York Presbyterian, Boston Children’s, and Geisinger Medical Center)



#singyourheartoutforhayden


MANY THANKS to all who participated in our 2017 challenge for Heart Month!! #singyourheartoutforhayden was a blast!! We loved watching your videos throughout the month all over Instagram and Facebook!

Spreading awareness for Hayden’s Heart and Congenital Heart Defects is a large part of our mission and we loved having you play a part in that branch this month- in such a cheerful and upbeat way!

If you missed the challenge, you can view some of the videos on our Facebook page, and contributions towards helping us support families affected by CHD are always welcome and appreciated!

Hayden’s Holiday

37 families from across the country submitted applications for our first year of offering bereaved heart families a ‘Hayden’s Holiday’. We received applications from as far away as the UK, Hawaii, South Dakota, Mississippi and Wisconsin; not to mention the number of applicants we had from up and down the East coast. To help us organize all of our applicants and choose winners fairly, we used a random number generator to select the 6 recipients of the first Hayden's Holiday grants.

Three of the recipients of our Hayden's Holiday grants lost their only child to CHD. Two of these couples are avid outdoorsmen and would like to go camping and hiking, while the other couple is self-described foodies, looking to explore a new town. Another one of our selected families has two children (one being the 11 month old twin of their heart angel) and also love to explore the outdoors, stating that both of their children, "love anything water related." We look forward to helping these Indiana boys splash around in the ocean! Our winner from the Southeast region had a straightforward request on behalf of their three year old - "anything Disney related please!"

Over the next few months, our team will put together extraordinary getaways for our recipients. Later this year, we hope to be able to share with all of you some of the families' experiences (and maybe even a photo or two!) from their Hayden's Holiday family getaways!





Hayden's Heart Monthly Beat - FEBRUARY

05 February 2017


FEBRUARY IS HEART MONTH!!

Join us for a CHD AWARENESS CHALLENGE!

Challenge your friends to #singyourheartoutforhayden and help us raise awareness for the leading cause of infant illness and death.

How does it work?

1. Make a short video singing your HEART out for Hayden!!

Have fun with it! Choose a song with the word heart in it, dress up, be funky, find friends to do it with you- anything goes!

JUST HAVE FUN!!
 help us in our fight to raise awareness for Hayden’s Heart and CHD!


2. In honor of Hayden’s 5th birthday next month, donate $5 to Hayden’s Heart- your donation will directly support heart families in need.

(To donate, visit our website www.haydensheart.org or text ‘hayden’ to #77977)

HOW AMAZING WOULD IT BE TO RAISE $5K FOR HIS 5th BIRTHDAY!!


3. After you make your AMAZING video and GENEROUS donation, TAG AND CHALLENGE three of your friends to do the same!

With accepting this challenge, you are helping us make more people AWARE - not only of CHD’s, but also of all the babies and children fighting it and for those who lost their battle.

Hayden’s Holiday



Last month we launched a new initiative called ‘Hayden’s Holiday’. This project is a grant given to bereaved heart families who have lost a child in 2016.

With the loss of a child, everything that once felt safe can so quickly feel overwhelming and unfamiliar. Having a few days to get away with those you love the most can often provide such a sense of calming even during such a devastating storm.

The five families chosen for Hayden’s Holiday 2017 will be notified by the end of February. Our team looks forward to working with them on setting up the perfect getaway.

Healing of the Heart


Our 2017 ‘Healing of the Heart’ retreat for mamas of heart angels is set for July 13-16th at Bailey Farms in Ossining New York. We are so thrilled that we have secured all 25 scholarships for this years retreat! (Transportation NOT included)

If you are a heart angel mama or know a heart angel mama that could benefit from this life changing experience, please refer to the retreat packet and apply for a scholarship by FEBRUARY 3rd. Those awarded a scholarship will be notified by February 10th.

https://drive.google.com/file/d/0Bxc2CZYzZov2aWt1UWp2YUpBUW8/view

If you wish to support this retreat, please email ady.dorsett@haydensheart.org for more information.

JUST 6 WEEKS UNTIL OUR 5TH ANNUAL 5K!




Register using the link below:

https://raceroster.com/events/2017/10556/haydens-heart-5th-annual-5k

Celebrate Hayden’s 5th Birthday in SuPeR-HeRo style with us this year and come dressed as your favorite superhero or bring your own superhero squad!

Sponsorship options and team discount rates available- please email rob.dorsett@haydensheart.org for more information!

'#singyourheartoutforhayden'

01 February 2017





Join us for a CHD AWARENESS CHALLENGE!!


Challenge your friends to #singyourheartoutforhayden and help us raise awareness for the leading cause of infant illness and death.


How does it work?


1. Make a short video singing your HEART out for Hayden!!

Have fun with it! Choose a song with the word heart in it, dress up, be funky, find friends to do it with you- anything goes!

JUST HAVE FUN!!

And help us in our fight to raise awareness for Hayden’s Heart and CHD!


2. In honor of Hayden’s 5th birthday next month, donate $5 to Hayden’s Heart- your donation will directly support heart families in need.

(To donate, visit our website www.haydensheart.org or text ‘hayden’ to #77977)
HOW AMAZING WOULD IT BE TO RAISE $5K FOR HIS 5th BIRTHDAY!!

3. After you make your AMAZING video and GENEROUS donation, TAG AND CHALLENGE three of your friends to do the same! (and don't forget- #singyourheartoutforhayden in your post!)

With accepting this challenge, you are helping us make more people AWARE - not only of CHD’s, but also of all the babies and children fighting it - and for those who lost their battle.



Meet Aylin and Isabella

12 January 2017


This year for our 5th annual 5K and Birthday Bash, we are honoring local sisters who both have a CHD called Tetrology of Fallot. Please join us this year in celebrating Hayden's 5th birthday and these two sweet heart warriors!

Details and registration for the 5K can be found on our website.

Meet Aylin and Isabella

'These are my 2 precious little girls, it has been a very long and rough road but I am so grateful to God to have them with me.
At my 4 months of pregnancy, is when I discovered their problem and many questions ran through my mind. It was a difficult decision but I listened with my heart and knew I was not wrong.
Just like that I continued the difficult journey with my little girls. I hung on with hope and faith without listening to what people had to say because at the end I knew that these moments of so much suffering, pain and events of those days in the hospital would only be memories.
Aylin Conil is 4 years old with Tetrology of Fallot, enlarged pulmonary valve, tracheostomy with life support and G-tube for nutrition. She has had 2 corrective heart operations. She is a super happy, loving and friendly little girl.
Isabella Conil is 7 months old. She was also born with Tetrology of Fallot. She had corrective heart surgery at 4 months of age. Isabella is healthy, happy and always smiling.'
~ Yenni, Aylin + Isabella's mother





Hayden's Heart Monthly Beat - JANUARY

02 January 2017


Looking Back at December

 The last of our ‘Holiday Cheer’ care packages were delivered the middle of December- thank you again to ALL of our supporters who helped make these care packages happen! 

We sent out 75 packages total to heart families in the cardiac units at Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Children’s Hospital of New York, Geisinger Medical Center, and Boston Children’s this holiday season!



Shout out to Be The Difference in Jersey City, NJ for donating 10% of their profits each month to Hayden’s Heart! We are grateful for their support this past year!


Hayden’s Holiday is a grant given to bereaved heart families who have lost a child in 2016. With the loss of a child, everything that once felt safe can so quickly feel overwhelming and unfamiliar. Having a few days to get away with those you love the most can often provide such a sense of calming even during such a devastating storm.

Each grant has a value of up to approximately $1000 per family and those awarded will be sent on a family getaway. Five bereaved heart families will be granted a holiday for 2017.

Please visit our website www.haydensheart.org for more information on how to donate to this project or to submit an application. Deadline is January 31 2017.

REGISTRATION IS UP FOR OUR 5TH ANNUAL 5K!

WWW.HAYDENSHEART.ORG


As we start a new year, I want to take this opportunity to personally THANK YOU for the unconditional love and support you have given Hayden’s legacy in 2016. Each year we grow and are able to do more in his name and it is because of your dedication that we are able to do so.

Wishing you and your families a wonderful start to 2017! We look forward to sharing with you all the GOOD that stems from your love and generosity to Hayden's Heart in the coming year!!



DEDICATED TO HAYDEN JETER DORSETT
3.12.12 - 8.16.12

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