I remember clearly the day my son called to ask us to meet him because he had something to tell us. I remember clearly the emotion that it took for him to tell us that Colton, his newborn son’s bloodwork came back with 2 markers for Cystic Fibrosis.
I remember clearly the day Courtney, Ben and I took 2 week old Colton to Children’s Hospital to have a sweat test for a positive diagnosis and then sat and listened to Dr. Schecter (who is amazing) explain many of the things that were about to come their way. I was there to take notes so that Ben and Courtney could listen. We met several people that day that would become part of Colton’s team. He has a pulmonologist, a nutritionist, a respiratory therapist, a nurse, a social worker and others I am forgetting.
He is now 5 (almost 6) years old. Before Christmas, he spent his first week in the hospital getting a CF tune up because his lung function numbers were low. He was a trooper and I was happy to be able to help his parents out and stay with him a couple of nights/days. His parents are so diligent to make sure that he does every treatment and takes every medication that he needs to help his lungs, pancreas and other organs work more efficiently. His team is amazing. The medication, the equipment and the treatments are not cheap. Luckily, between insurance and the Cystic Fibrosis Foundation, Ben and Courtney’s expenses have been reasonably affordable so far.
Colton should be starting a life changing medication soon. This is in part due to funding for research and development of this medication. What we need now is funding to find a cure so that Colton and others don’t have to live with this disease anymore.
I stride for my grandson, Colton until CF stands for Cure Found!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We've come so far, but there's still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!