I want to express my heartfelt thanks for taking a moment to visit my fundraising page.
In 2008, my daughter, "Amazing Grace", was born with Hypoplastic Left Heart Syndrome. She had her first open heart surgery at a week old, and then due to complications and a delayed recovery she had to have a revision a few weeks later. After the second surgery, she recovered beautifully and left the hospital on August 12, 2008, after spending 8 weeks in the NICU. In November 2008 Grace went back to the operating room and had her third open heart surgery. This was by far the "easiest" surgery for her, recovering quickly and with no complications and came home six days later, making it home in time for her first Thanksgiving. Over the first year of her life, Grace received many services and thrived as an infant meeting all of her milestones and was never too far behind her twin sister.
On May 10, 2011, Grace had her Fontan procedure - her fourth time going into the OR for open heart surgery. This was quite possibly the scariest day of our lives. She ended up on bypass for over 5 1/2 hours and we had no idea what the outcome would be. Immediately out of the operating room, 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 her last surgery. She spent over a week in the Pediatric ICU and scared us multiple times. She was moved to the cardiac floor and spent another 2 weeks there before having all tubes and lines removed, eating normally and being allowed to go home. Once home and reunited with her sisters, Grace recovered well and continued to meet, and even exceed, expectations. She has always been bright, kind and loved by her peers. She excelled in elementary school and junior high and has been on the honor roll every marking period of high school. She has worked so hard and has set herself up for success future.
Grace is now almost 18 years old and will be attending the University of Georgia in the fall. This is a milestone that we could not begin to even imagine for her when the doctors first told us about her diagnosis. We were led to believe that she would always struggle, especially in school as so many HLHS babies before her did and continue to do so. She is truly AMAZING and has been proving that her entire life. She is not only doing well cardiac wise and in the classroom, but she is a 4 year member of the varsity golf team, participates in numerous clubs, babysits for multiple families, currently holds a job on the weekends and his loved by so many of her peers.
This is our "why". Without research and advances that have been aided by fundraising and advocacy by organizations like the Children's heart Foundation, none of these accomplishments would have been possible for Grace. We are truly grateful to the generosity and hard work that so many give to hep heart babies like ours.
It's hard to believe that all of Grace's surgeries were so long ago. The memories are still so vivid in our minds and we are beyond proud of the kind, compassionate and beautiful young woman she has grown into. We know that she will always be a "cardiac patient" and therefore we will continue to fight the fight to give her the best future possible.
I warmly invite you to become a part of this milestone journey by supporting or joining our team and fundraising efforts. Together, we can raise the funds essential to continue the life-saving research that turns heartbreak into hope. Our family was once in the position where we didn't know what the future held for Grace. But thanks to the brilliant surgeons like Dr. Jan Quaegebeur, cardiologists like Dr. Julie Glickstein, nurses who are superheroes and especially to the research - our Grace along with so many other CHD babies have been given a full life.
Our mission is not over and your contribution holds immeasurable value to me and to every family who needs CHF's support. There is always more to learn to continue providing hope and futures to the parents and families that hear those dreaded words "Your baby has something wrong with their heart" - words I will never erase from my memory. But my amazing girl has made it easier for me to focus on the good and look forward to seeing what other accomplishments she will achieve.
Thank you for your generosity, and for standing beside me in this mission.
Your support means the world
