Hi my name is Deardra Cook. My husband Patrick and I have 4 children. Our oldest, Alexander, has cystic fibrosis.
When Alex initially came into the world, he received a clean bill of health. We were able to go through the standard postpartum routine, showing off our little bundle of joy to our family and friends. The next morning, during a routine well-being check, our pediatrician noticed that Alex was experiencing labored breathing, and the team was instantly concerned. He was rushed to the neonatal intensive care unit for further examination which involved dozens of blood draws, countless pokes and prods, and a very frightening spinal tap. At first the doctors thought he swallowed some meconium which might have created a bacterial infection in his lungs. He was prescribed a comprehensive IV cycle of antibiotics, so we set up shop in a little corner of the NICU for the first eight days of his life. We were thrilled at the conclusion of the treatment when we were finally able to bring him home.
Alex was losing weight while in the NICU and when we got home it became more rapid even though we were feeding him every two hours, he was still failing to thrive. His doctors initially thought it was due to the infection, but once we got home and his newborn screen showed that he carried a gene mutation that causes cystic fibrosis, called Delta F508 unbeknownst to us they were starting to suspect something more was going on.
Flashback to the previous February. During routine prenatal blood work, we learned that I am a carrier for Delta-F508, a gene that accounts for 90% of all CF cases. Upon learning this, Pat was called in for genetic testing. We were relieved when he tested negative for the 97 most common CF genes which account for 99.3% of all cases of CF. We thought our baby was in the clear for CF given the infinitesimal odds.
We were told to take Alex to the hospital again for a sweat test. We assumed the test would be merely a routine check to rule out CF conclusively. A geneticist brought us into a room to await the results of his sweat test, and our spirits were high, with lots of joking and taking turns trying to make Alex smile. A few minutes later, five people came into the room and our hearts sunk. A lady in a lab coat sat down on a chair, folded her hands on her knee, and said very quietly, "What do you know about Cystic Fibrosis?" It felt like the world had crashed down on us. Alex's salt levels were nearly double that of a healthy baby, proving conclusively that he had CF. The next hour seemed to move in slow motion as different people came in to console us and plan to check Alex into the hospital. Pat (ever the history guru) remarked that it
was June 6 -- World War II's D-Day -- and for us our own war also commenced.
Checking into the hospital that afternoon, suddenly we felt like Alice hurtling down the rabbit hole. We were coached during back-to-back seminars by an array of CF specialists -- pulmonologists, geneticists , nutritionists, nurses, respiratory therapists, social workers -- an entire community of friendly faces who would become our confidants and Alex's literal saviors in these new conditions laid before us.
Fast forward to today, and Alex is a lot like any other 9-year-old boy.
He is a very curious, charming, inquisitive, and an enthusiastic little boy who loves school, swimming, golf and playing with his siblings. While CF plays a big part in our lives it certainly does not define it. On any given day, he takes 20-30 pills, does a minimum of 60 minutes of breathing treatments, which increases to 2-3 hours if he catches a respiratory virus he cannot shake. This past March Alex was hospitalized for 10 days for a virus he wasn't able to get rid of, which is yet another reason why we continue to fundraise and raise awareness of this disease and support the mission of the Cystic Fibrosis Foundation.
We ask if you would like to help us further the mission you can donate to the CFF to ensure continued funding is available for research for future treatments and ultimately a cure for Alex and all those living with CF.