Samantha Denti- our November heart warrior

18 October 2013

Samantha's Story~

Samantha is a 28 year old diagnosed with Dilated Genetic Cardiomyopathy at the age of 24. Although looking back now we can say she had her disease issues in her high school years. When she was diagnosed in June 2009 it was confirmed she did in fact carry the gene that took her fathers life at the early age of 39. Samantha’s world turned upside down, many tests, and numerous cardiologists later, it showed her injection fraction was a 15, which is dangerously low. A healthy heart should be between 50 and 70. In December of 2009 she received a pacemaker and defibulator.

Samantha tried to carry on to live a ‘normal’ life but her health was a constant issue. She suffered many side effects from medicines and was continuously diagnosed with ‘other’ medical issues or ‘unknowns’.  Hindsight is a beautiful thing because looking back now we clearly see all the while it was her heart. Since February of 2013 she declined rapidly. Was constantly in and out of different hospitals. Finally and miraculously landing her in Newark Beth Israel permanently since August 2013.

Samantha had numerous procedures during her time here and also withstood 4 major surgeries in a 3 day period. She intrigued her amazing group of doctors and certainly put her doctors education and strength to the test. As bad as it got, Samantha and her doctors continued to try. Her family, friends, wonderful doctors, and power of prayer gave Sami the will to live.

She received a beautiful heart on September 28th, 2013. We thank God everyday for the miracle we witnessed. We thank God for the donor and pray for their family. We hope they feel our love and appreciation for the life they gave to Samantha.

Happy 1st Birthday Hayden's Heart INC!!

10 October 2013

When Hayden tragically and very unexpectedly died last August, I found myself lost in so many ways. Loosing a child in the first place is the world's ultimate tragedy- I truly believe that nothing can bring the heart, mind and body more pain than this. Then add in that my child was sick and required my care more than a healthy 5 month old, and lost doesn't even begin to describe what I was feeling after Hayden was gone.

My days revolved around his medical needs as well as trying my best to make sure he had what he could of a normal infancy. Here is a peek back into what one of our weeks would have been like:

Monday - the pediatrician in the morning, and Physical Therapy in the afternoon.

Tuesday - trip to the cardiologist - 45 minutes away, so an all morning and afternoon affair.

Wednesday - trip to his chiropractor, a 30 minute drive - but well worth it for Hayden and his development.

Thursdays - either feeding therapy or a visit to his Developmental Team, another 30 minute drive- but again, doing everything we could to make sure Hayden was given the best chance at a normal, long life.

Friday - a down day this week - I tried to keep jackson home with me on Mondays and Fridays so this week in particular, we had Jackson at home with us as well as his babysitter, who we needed there because we never knew what the day would bring for sweet Hayden, it could very well be a day full of vomit and stressed breathing where I would be on the phone with CHOP and face-timing trying to figure out what to do for him and if we would need to be visiting the ER or transported back to CHOP.

I am telling you all of this so you can see what a week might be like for us- and in no way am I complaining - I'd do every single part of it again, live life in the hospital - if he could just be here with us today. In between all of the appointments we had medicine that needed administered every couple of hours throughout the day and of course, feeding time through his NG tube - which would often be followed up by a reflux like you've never seen. But as you know, somehow all of this didn't effect the smile Hayden had and how happy he always was - love carried him through everything.

When he died, a large part of me died too- and I will never get that back. Like most grieving parents, I walked around my house in circles, literally, trying to figure out what to do with myself. Not only had I lost my child, but I felt like I lost my purpose in life. I thought my purpose was to be Hayden's 'nurse' and caregiver and when he died, I truly didn't know what to do. I couldn't bare the thought of going back to work yet - for months I couldn't function for more than an hour or two without having a breakdown. I certainly couldn't do that in front of 25- 4th graders. I still had Jackson, but as parents know, the older they get, the less they need you to care for them. He was becoming (mostly because he had to) pretty self sufficient. And he was in school three mornings a week. So - after about 6 weeks of literally crawling out of my own skin, and out of sheer desperation to find a way to pass the time, we decided my new purpose in life was to keep Hayden's memory alive, to help other families battling with CHD, and to start Hayden's Heart INC.

Rob and I have always been the type of people who, when putting their mind to something, it gets done. We have a vision of something and run with it with all we have. Hayden's Heart INC was of course, no exception. Rob had the paperwork completed and our first event was planned within a few weeks of founding Hayden's Heart. Our mission was clear and came very easy to us- we wanted to help raise awareness for Congenital HEart Defects as well as financially helping a heart family in need all while spreading Hayden's story around and keeping his memory alive. Our first fundraiser we made over $4,000. We were amazed at how many people wanted to help us with our mission and make it successful. Hayden's 1st birthday we also coupled with a 5K- and raised over $12,000. We've had a total of 6 fundraisers this year that we have hosted and each one we honored a different heart family. Some more successful than others, but all of them adding to our goal of raising awareness and funds for CHD families. We've had around 20 other fundraisers hosted by supporters from all over the country for Hayden's Heart. It truly is something spectacular to receive an email or message from someone saying they would like to host their own fundraiser and help us first hand in our mission.

I never dreamed that in one year we would have raised as much awareness and as much money as we have. I plan in the next couple of weeks to get breakdowns and very specific numbers for everyone to see just what their help and support has done for Hayden's Heart. It is simply unbelievable and I want to thank every one of you who have supported us in this mission and making it as successful as it is in just one year. Thank you to all of you who have helped out at one of our events, participated in an event, hosted your own event, sent in donations, purchased clothes, travelers, and other Hayden's Heart goods, sent in items for auctions, shared our events on your pages, and told Hayden's story - it is truly because of all of you that our dream of Hayden's Heart has become a crazy successful reality and we are forever grateful.

So, take some time this month and celebrate Hayden, his foundation, and his sweet little heart. And cheers to you for being a factor in helping our vision and our dream become what it is today. I cannot wait to see what's to come in the year and years ahead!!

3.12.12 - 8.16.12

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