By Joyce Nanette Johnson, Staff Writer
ST. PETERSBURG — Nicole Marion’s childhood was not one of fairytales, rainbows and butterflies. It was a world filled with the harsh realities of living with a mother, Tammy Williams, battling cystic fibrosis, which is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body.
At the young age of 11, Marion became one of her mother’s primary caregivers. The experience shaped her life, and years later would be a conduit to help other young people faced with life-threatening illnesses by penning her first book, “Me, My Mom, and Cystic Fibrosis.”
“It was emotional to watch,” she said, describing the deterioration of her mom’s physical health.
Marion had to grow up fast as she was the one charged with preparing her mom’s medications and meals.
“It forced me to make decisions that kids usually don’t have to make. I felt I had to be strong for her.”
There are 30,000 people in the U. S. diagnosed with cystic fibrosis. The lungs are severely impacted as the disease causes cysts (fluid-filled sacs) and fibrosis (scar tissue) that severely constricts the ability to breathe.
The debilitating disease impacted the everyday life of Marion’s entire family. She remembered that even going to a Fourth of July picnic in the park was taxing for her mother.
“Just holding a conversation was hard for her, even to laugh,” she remembered. “We always had an oxygen tank nearby. We did a lot of in-house things due to her condition.”
Marion’s mom passed in 2002 at the age of 33. The life expectancy for people diagnosed with cystic fibrosis is 41 years. Marion celebrates her mother as a fighter and cherishes the moments and memories that she and her siblings share.
“She would put smiles on our faces and make us laugh,” Marion reminisced.
“Me, My Mom, and Cystic Fibrosis” is written in Marion’s point of view as a child, and she hopes that her book will be a comfort to children and families dealing with the disease.
“I want to shine light that the disease does not limit them to being sick. There’s still life, joys and smiles,” she said.
Since the debut of her book on Mother’s Day, Marion has been hard at work on her second book titled “Sweet Remedies.” It will be a collection of homeopathic and natural remedies geared toward children with chronic diseases.
She mentions adding pomegranate to yogurt as an excellent antioxidant, or to apply papaya to protect the skin from sun damage. The budding writer is a certified EMT, and she and her husband, Joseph, have three children aged 4-15 years old.
“I will always cherish the memories of my mother,” Marion shared. “Her courageous battle with cystic fibrosis is the exact reason why I want to bring awareness to not only my community but the entire world.
The most important lesson of “Me, My Mom, and Cystic Fibrosis” that Marion wants the reader to walk away with “is to simply show love and support” to anyone suffering from a chronic illness.