There are over 30,000 adults and children in the US living with Cystic Fibrosis. My boys are 2 of them.
Cystic Fibrosis is a life shortening disease of the lungs and digestive system. Last year, with the birth of our second child, our lives were forever changed when we received his Cystic Fibrosis diagnosis. And since CF is genetic, we also had our older son, who was 2 ½ at the time, tested and found he also had the disease.
They are like a lot of other kids but every day they each take up to 8 different medications, including enzymes with every meal to help absorb and digest their food, and receive 60 minutes of chest percussion therapy to help loosen the sticky mucus that clogs their lungs and other organs. And that is just when they are well – the medications and treatments increase when they are sick. Many of the medicines they take to survive are available today due to the vital research and funding provided by the Cystic Fibrosis Foundation.
While there is NO CURE, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. There are new, exciting drugs currently in trial – medications that can improve not only their quality of life, but life expectancy. There was a time not that long ago that children with CF did not make it to grade school or to be a teenager. But now, many of those with CF are living into their 30s, 40s, and beyond – this is a fact that I hold onto every day.
We found a nationwide event, called Great Strides, which raises money to help support life-saving research, quality care, and education programs. So we signed up, formed the J Team (for Jackson and Jacob) and now we have a way to help support the cause and make a difference.
My husband and I felt helpless when we learned of our kids’ disease. But being able to raise money in the search for a cure (CF research does not get federal funding) gave us an outlet not only to help our children but all those living with Cystic Fibrosis.
Last year, we joined the Great Strides Walk at the last minute, and through the generosity of friends, family, co-workers and strangers, the J Team raised over $10,000. Every dollar counts and can make a difference in the lives of those with CF. Please help us add tomorrows when we walk this year on May 17th at Garden Spot High School. Please visit our team page at fightcf.cff.org/goto/JTeam. While you are there, please take a moment to watch their video, which can also be found on YouTube (or search “J Team Great Strides”).
Please help us make CF stand for Cure Found!
I thank you! Jackson and Jacob thank you! And all those living with Cystic Fibrosis thank you!
— Jennifer Pontz Miller