A boy and his dog. Books have been written, movies have been made, and stories have been told about the special relationship between the two. For years, Jonah yearned for a dog. This past September, he was shocked when we surprised him and Javan and Ansley with the news that we were getting a puppy. It didn't take long for all of us to fall in love with our little Lambeau, but no one could argue that there was a special bond between him and Jonah. It was a delight to our hearts to see them together. Jonah told us often how happy Lambeau made him, how perfect he was, how much he loved him, how having him was what he had always dreamed of. And then...only four months after getting him, we had to say goodbye. As hard as it was to face, we couldn't deny that having a dog in the house was causing issues for Jonah. He struggled with tightness in his lungs, not feeling like he could take deep breaths, and not having the endurance he was used to. The last thing someone with Cystic Fibrosis needs is more lung concerns.
You see, we have been worried about Jonah's lungs every day of his 14 years of life. We worry about every little airway, worry that thick, sticky mucus will clog them, inflame them, infect them, lead to permanent lung damage. We worry about his lung function, and every time it is tested, we hold our breaths with fear that the numbers will be lower than last time. While we know that the harsh reality is that CF is a progressive disease with no cure, while we know it is expected that people with CF will see a decline in lung function over time, our hearts still ache every time we are handed the paper charting his lung function results and see the downward sloping line. We worry about Jonah's lungs while we sanitize nebulizers and while we watch him sit for 60-90 minutes every day inhaling medications and wearing a vest that shakes his body to help break up mucus. We worry about his lungs every time he gets a cold, every time the air quality is bad, every time we hear him cough. We worry about his lungs as we order prescription refills on the 13 different medications he takes every day, or spend time on the phone dealing with insurance hassles. We worry about his lungs every time he has a bronchoscopy, afraid the pulmonologist will find evidence of more inflammation and lung damage. We worry about his lungs every time we are faced with the reality of how serious CF is, such as this past October when his lung function dropped 30 percent and he was sick enough that he had to spend nine days in the hospital. We worry about his lungs as we wonder what his lung function will be next year, in five years, in ten, as we think about a lung transplant and if and when one will need to be considered, as we have to live with the knowledge that the median age of survival for people with CF is still only in the early 40s.
When a group of parents started the Cystic Fibrosis Foundation in 1955, their goal was to advance understanding of this little-known disease, to develop new treatments and specialized care for their children, and ultimately to find a cure. Sadly, most of their children didn't live past five years old. Yet, their vision lives on as the CF Foundation has carried these goals forward and is working tirelessly to find lifesaving new therapies, and one day, a cure for all people living with this devastating disease. We are so thankful for the progress that has been made. Drugs and therapies have been developed to fight the effects of the disease and improve treatments and daily life for CF patients. There are even drugs showing promise to reverse the basic defect in certain types of CF gene mutations. This is all wonderful, but we hope you agree, it is not enough. The reality is that there are still children with CF who end up needing double lung transplants, teenagers with CF who die before they get to go to college, adults who can't foresee a long future ahead, people so affected by the disease they are unable to live normal lives.
Every year the CF Foundation sponsors Great Strides walks throughout the country, bringing people together to raise money and awareness of CF. Because only 30,000 people in the United States have CF, there is little to no government funding for research, so the success of the walks is crucial. Since 2006, Team Jonah has raised over $310,000 for the CF Foundation!!! On Saturday, June 1st, our team will be participating in the Long Beach Great Strides walk at El Dorado Park. We hope to raise another $20,000 this year. Will you help us meet our goal and find a cure for Jonah and the thousands of others who battle CF? To make a secure online donation, simply click on the donate button above! Or you can write a check payable to "Cystic Fibrosis Foundation" and mail it to "Team Jonah P.O. Box 2751, Cypress, CA 90630." We greatly appreciate any amount you can donate. All contributions are tax deductible and will be used to continue the CF Foundation's vital research and care programs. It would be a delight to have you walk with us as well. To register, visit TeamJonah.com and click on Join Our Team. We are so thankful for the many people who support us and are helping us work to change the meaning of the letters CF to Cure Found!