Kelly, Kylie, Madison, Molly

Podcast Episode Show Notes

God is in Your Story

Before time began God was writing your story. He knew there would be pain, but His purpose for your life is greater. He knew you would ask why, so He gave us His Son – the ultimate answer.

Kelly’s testimony is evidence of the unwavering truth that God is in every detail of our story. The circumstances you can’t comprehend. The joy and the pain. The tears and the laughter. The brokenness and the breakthrough. It’s a story of surrender. I hope that you are moved by Kelly’s story and encouraged that God is in your story too.


Kelly Marcucci

Madison Joy made her grand entrance into this world Saturday September 6, 1997. Coming in four and a half weeks early. Everything about my pregnancy was normal. It was a very exciting time in my life as many people I knew were having children. Madison was diagnosed with Jaundice and had to remain in the hospital until her bilirubin levels came down. On Thursday September 11th we were finally going home. Prior to departure the doctor entered the room and gently stated “Your daughter was born with a rare genetic disorder. She has a deletion of the long arm of the 14th chromosome. You have an appointment at Buffalo Children’s Hospital on Monday”. I was devastated. The longest weekend of my life. Expecting all the answers from the doctors only to hear, “Madison is going to write her own book”.

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Welcome to Holland

Kelly lives by the deep meaning of Welcome to Holland by Emily Perl Kingsley.

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack. your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

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About the Disease

You can learn more about Rare Genetic Diseases called Leukodystrophies here.

About Newborn Screening

Learn more about how early detection through Newborn Screening saves lives.