My Personal Fundraising Page
Amazing Grace - She truly is AMAZING
Thank you for visiting my fundraising page! I am participating in the Congenital Heart Walk to support the mission of The Children's Heart Foundation: to advance the diagnosis, treatment, and prevention of congenital heart defects by funding the most promising research.
I hope you'll join me by supporting my fundraising efforts as I work to raise funds for life-saving research for my Grace and so many other CHD warriors.
Grace was born in June 2008 along with her twin Abigail. The difference between Grace & Abby, is Grace was born with Hypoplastic Left Heart Syndrome. She had her first open heart surgery, the Norwood on June 19, 2008. After a rough go, she had a Norwood revision on July 27, 2008. After the second surgery, she recovered beautifully and left the hospital on August 12, 2008. She spent 8 1/2 weeks in the NICU.
On November 18, 2008 Grace went back to OR and had the Glenn Procedure - another open heart surgery. This by far, was the "easiest" surgery for us. She recovered amazingly fast and came home six days later and was home in time for her first Thanksgiving.
Over the first year of her life, Grace received many services, and thrived as an infant. Thankfully she met all of her milestones in a timely manor and was never too far behind her twin sister!
On May 10, 2011, Grace had her Fontan procedure. This was quite possibly the scariest day of our lives. She was on bypass for 5 1/2 hours and we had no idea what the outcome would be. Immediately out of the OR, Grace's cardiologist pointed out to us that she was now "pink". We were amazed at how obvious it was when looking at her little toes and fingers. No more "blue baby"! Grace had a rough road to recovery after the Fontan. She spent over a week in the PICU and scared us a few times. She was moved to the cardiac floor and spent another 2 1/2 weeks there before having all tubes and lines removed, resuming eating normally and being allowed to go home.
Grace is now 14 1/2 years old and is doing AMAZING!! She started high school this year and has adjusted to the new routine, building, teachers, schedules and kids so well. She also just recently made the Varsity golf team, something she has been working so hard for. Just last week, we had a routine echo and appointment with her cardiologist and we all reminisced together how far we have come as a "team".
It's hard to believe that all of Grace's surgeries were so long ago. The memories are still so vivid in this mommy's mind! Grace has come so far and has beat so many odds. She amazes us, her doctors and everyone else everyday. She is an honor student in school, has played multiple sports over the years, plays piano, is social, but most of all - she is THE kindest person. Always putting others before herself. She may only have "half of a heart" but that half is pure gold and we are so very proud of her.
We look forward to joing other CHD families this year at the annual Long Island walk becasue these kids deserve so much celebrating!
Who am I? I am a Heart Mom
Who am I? I am many things but the most important title I go by is "mom" or "ma" or "mommy" and yes, even sometimes "bruh"... Where did that come from? I have spent the last almost 19 years rasing three GORGEOUS girls - now young ladies. Morgan, Grace and Abby are why I do what I do - from being on the PTA to fundraising committess; from driving miles and miles daily to just having a quiet family day at home; from crying tears of happiness to screaming in pure frustration... Being a mom is the best title I have ever been given. But when your "mom" title is altered to "heart mom" it changes you forever. I am one of the "lucky" heart moms becasue my CHD warrior is doing so well. Yes, we have had many bumps in the road and too many scares to count, but my Grace is thriving and 15 years ago, we were not sure that would be possible. Receiving the news at my 20 week sonogram that there was "something wrong" with Baby A's heart was like nothing I can explain and certainly nothing I could have ever been prepared for. I was scared, angry and asked a lot of "why me?" and "why my innocent baby?".
They say things happen for a reason and although it's hard to accept, I think our "why" was a few things: 1- To prove so many medical professioinals wrong - those who told me to selectively terminate; those who told me Grace would have a tough life; those who told me she would never do well in school. I'd like to give them all a "How do you like us now???" 2- The more important "why" is becasue we have become part of this amazing Heart community. We have met so many families with so many wonderful kids. And together, we all work so hard to make a difference and spread awareness. There is nothing more fulfilling than knowing you have helped to give even just one baby a better chance at life. But we also never forget those babies who did not have the outcome we were so blessed to have. I will never let a heart angel and their family's ultimate sacrifice be forgotten. This is why we fundraise and support research - so less and less famiilies each year have to experience having a heart angel.
So I am a mom, a heart mom and a CHD awareness advocate. Two out of three titles I would have never guessed I would have, but also two titles I am beyond proud to have
Grace at about 5 weeks old - Still in the NICU
Grace now! All Grown up - gorgeous and sweet
Grace post Fontan surgery
Nothing can stop this kid
1st day of Kindergarten
1st day of high school
A true superhero
Twins
Walking for CHS research
Giving back to the hospital with toys at Christmas
My Badges
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First Donation
Awarded when Anyone receives 1 or more donations
Awarded 02/01/2023
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Heart Aware
Awarded when Anyone reaches $75.00 in donations
Awarded 02/01/2023
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Heart Champion
Awarded when Anyone reaches $2,500.00 in donations
Awarded 02/02/2023
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Heart Friend
Awarded when Anyone reaches $150.00 in donations
Awarded 02/02/2023
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Heart Hero
Awarded when Anyone reaches $500.00 in donations
Awarded 02/02/2023
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Heart Warrior
Awarded when Anyone reaches $1,000.00 in donations
Awarded 02/02/2023
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Fundraising Achieved
Awarded when Anyone reaches 100 % of goal
Awarded 02/02/2023
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Profile Completed
Awarded when Anyone completes their profile
Awarded 04/18/2023
$1,579.70
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$1,000.00
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My Supporters
- Tara Pellicone May 2023 $50.00
- Megan Fritz May 2023 $250.00
- Dorothy Borowsky Here’s to You Amazing Grace ❤️ May 2023
- Anonymous May 2023
- Anonymous May 2023
- Megan Fritz May 2023 $250.00
- Greg Mallgraf We are so very proud of our AMAZING Grace - our heart hero - and so beyond blessed to be her parents April 2023 $250.00
- Maureen Orsen May 2023 $154.50
- Sandra Gatto Love you and your family! ❤️ April 2023 $103.00
- Patricia Djemil Thank you for fighting the fight to find cures for Heart Disease! Both of my parents had heart conditions.....may they rest in peace XXOO April 2023 $103.00