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Go Ask Mom

Diagnosis launches mom in fight against cystic fibrosis

Posted May 9, 2010 8:52 p.m. EDT

When her five-month-old son failed to thrive, tests confirmed what Nicole Smith knew might be the cause: cystic fibrosis.

Family members had tested positive as carriers for the genetic disease that affects a person's respiratory and digestive systems. The diagnosis of the life-threatening disease was devastating. The family went into action.

Now at age 4 1/2, as you can see from the video, Dylan Smith is an active, high-energy little boy looking forward to kindergarten this fall. He was running and jumping outside when I visited his house the other day.

"It's a disease that hurts over time even though he looks great now," said Nicole, who has an older son as well.

Dylan's daily life includes therapies and medications. For at least 20 minutes twice a day, he wears a contraption, which you'll see in the video, to shake up the thick, sticky mucus that collects in his lungs. Can you imagine having to get your toddler or preschooler to sit still for at least 40 minutes a day to do anything?

An illness that might require a few days of rest and chicken soup for a healthy kid could send Dylan to the hospital for a couple of weeks.

And Dylan can't hang out with other kids who are living with the same disease. People with cystic fibrosis can pass cystic-fibrosis specific germs to each other, which can cause sickness and even death.

While Dylan is doing well now, the disease will take its toll. Right now, the median predicated age of survival for kids like Dylan is 37 years.

"As a mom, that's what's hard," Nicole said.

Since Dylan's diagnosis, the Smith family has gotten involved in the Cystic Fibrosis Foundation,  a non-profit that has been very successful at raising money for research to improve treatments and find a cure for the disease, which affects about 30,000 people in the United States.

This Saturday, the foundation's North Carolina chapter will hold a Great Strides walk in downtown Raleigh on Halifax Mall (the grassy area surrounded by state government buildings) to raise money for research, treatments and hopefully a cure. Check-in starts at 9 a.m. and the walk begins at 10 a.m.

Another walk is scheduled for H.D. Ritter Park in Cary on Saturday with check-in starting at noon and the walk beginning at 1 p.m.

Click here for all the details about Great Strides.

And learn more about the Smith family by checking out this video.