19 Jul Michael’s Never-Ending Story

By Sherry Jackson

This is Michael’s story….

I will share it with anyone willing to listen, because I promised him I would never rest until there was a cure for the nasty disease that ended his life way too soon.

Cystic Fibrosis.

I had never heard of it.

Michael was born on September 20, 1997. He was my second child, and I knew within days that something wasn’t right—constant dirty diapers, failure to gain weight, excessive coughing, just to name a few of the problems.

I took him to several pediatricians, and, when he was four-and-a-half months old, we finally had an answer.

Cystic Fibrosis.

I researched it. I cried. I was terrified.

A life expectancy of just 29 years? How could this be? He looked like a perfect baby, but there was a war going on inside of his tiny little body.

After a two-week stay in the hospital and learning all we could about this disease, we took him home armed with a ton of information and medication.

He needed to take enzymes to digest his food and breathing treatments several times a day. After being properly diagnosed, he began to thrive!

Michael grew into a beautiful little boy, so full of life. With his blonde hair and blue eyes, he was a charmer, for sure.

With the exception of his medication and breathing treatments, Cystic Fibrosis almost didn’t exist. Almost.

At around 10 years of age, Michael contracted a microbacteria. And Cystic Fibrosis reared its ugly head and showed us who was in charge. And so began very frequent bouts of pneumonia and hospital stays, each tearing down his lung function little by little.

The little boy so full of life suddenly became withdrawn; he was no longer allowed to attend school and often too sick to have much of a social life.

He loved life, his friends and family.

At age 14, on July 12, 2012, Michael entered the hospital for his final stay.

He exited this world on September 30, 2012, after two-and-a-half months in ICU—just 10 days after his 15th birthday.

Michael never got to get his driver’s license, go to prom or even have his first kiss.

Cystic Fibrosis stole all of this from him.

While Michael lay in a coma at Shands Hospital, I made a promise to him that I would not rest until there is a cure. Nine years later I still honor my promise to him, to not stop until there is a cure.

I keep his memory alive each year by participating in the Great Strides Walk to Cure Cystic Fibrosis. Each year, family and friends gather in his memory and raise funds for a cure; to date, we’ve raised close to $100,000.

While there is still no cure, we are closer than ever before with the new miracle drug, Trikafta. With the approval of this drug, people with Cystic Fibrosis are living near-normal lives—going to college, getting married and even having kids!

I don’t know why God chose to take Michael from us so soon, but I do know my son made an impact on those around him with his witty charm and infectious laugh.

I do take comfort in knowing that he is resting comfortably with Jesus, free from the earthly chains that bound him.

What have I learned from all of this?

Life is hard. Life is short and goes by fast.

Hug your loved ones, especially your children.

None of us are guaranteed tomorrow.

And I won’t stop until it’s done.

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Sherry Jackson is a Branch Manager and Certified Financial Counselor with Achieva Credit Union. She has been advocating for Cystic Fibrosis since 1997 when her then-4-month-old son was diagnosed with the disease. Over the last 24 years, she and her team Michael’s Miracles have raised nearly $100,000 for Cystic Fibrosis research in the quest for a cure. She lives in Land O Lakes with her husband, Charles, and dog, Teddy Bear. She has two adult daughters, Caitlin and Deanna. She enjoys cruising and beach vacations as well as teaching budgeting and financial literacy.