Norah's Heart of Gold
You've been following along with Norah's Story. She made such an impact in her 3 weeks of life. She brought hundreds of people together to be a supportive community for her mom and dad. Here is THEIR version of the story...
To our family, friends, acquaintances, supporters, prayer warriors, and everything in between:
Thank you so much for celebrating Norah’s life with us. We never imagined how big our support system would get over the past several months. Norah has touched so many hearts. We never imagined that her story would go viral on social media, but it just goes to show how God can shine thru.
Norah was diagnosed in utero with HLHS, which is a congenital heart defect that required her to have a series of at minimum 3 open heart surgeries before the age of 2. Many of you don’t know the details of why Norah couldn’t receive her first surgery after birth, and why we took the path we did. After birth, she was diagnosed with a genetic disorder called Turner’s Syndrome. The two diagnoses together weren’t a good mix. After weighing our options, we then chose to take Norah home with us to make her comfortable and so that all of us could feel as normal as possible.
We kept asking our prayer warriors to pray for more time. When that time was just a short 3 weeks, it just seemed too soon. We then stumbled upon some research that reminded us how lucky and blessed we truly were. 99% of pregnancies with Turner’s Syndrome end in miscarriage. Let me say that again, 99% of pregnancies with Turner’s Syndrome end in miscarriage. Norah is our 1%. She beat the odds. She not only survived the pregnancy, but she was also carried full term and had no physical signs of Turner’s Syndrome. We then realized we got 3 full beautiful weeks with our Norah Grace, something that statistically is improbable.
Throughout this journey, we have seen God in SO MANY WAYS. We could go on for hours telling you stories of how God made his presence in so many different ways, but we’d be here for hours. He has used Norah to shine light on himself and his beautiful acts of love, it’s no wonder we call Norah our little sunshine.
People keep telling us how strong we are, when in reality that simply isn’t true. What is true is that God is strong through us. Without him, we would have never made it thru this difficult time. God is good, even when it is hard to see.
Norah will always be our little sunshine. We can’t even begin to describe the love we have for her. The past three weeks have been nothing short of amazing. If you get anything from this, please continue Norah’s legacy. We don’t want people to ever forget the love and grace that God has shown thru us and Norah. Her heart will forever stay gold.
Scott and Megan Mammolenti
Meet Norah Grace.
Photo + Film provided by:
Chandler Rose Photography