Six years ago on a sunny June afternoon in Worcester, Massachusetts, cystic fibrosis made its first palpable invasion into our lives. We were in the hospital, preparing to take our first-born, two-day-old son home. We were elated, utterly in love with our new baby and anxious to begin our new life as a trio. In an instant, our world imploded.
While snuggling in mommy’s lap, Colin stopped breathing. In a blur, a nurse grabbed him and put him on an examining table as various nurses and doctors converged. Shocked, we stood in horror. A doctor called out for oxygen, and more nurses rushed to the scene. I got a small glimpse of our son through the converging bodies and stared at his chest, almost willing it to move. After what seemed like an eternity, Colin’s chest heaved and resumed normal respiration. It was the first scare of many. Colin spent the next few weeks in the Neonatal Intensive Care Unit, where he would routinely stop breathing, signalling blaring alarms, but he would always recover. He was a fighter, but we still didn’t have any answers.
We soon did when doctors diagnosed him with cystic fibrosis.
Although my wife and I had both tested positive as CF carriers (another shock) during pregnancy, Colin’s diagnosis was met with trembling knees and tears.
But we ultimately decided that CF wasn’t going to be a boundary or a crutch for our child. While CF was certainly going to play a role in our lives’, it was not going to define him or us. We took 24 hours to purge ourselves of numerous negative emotions: fear, jealousy, envy, and self-pity. And then we vowed to fight.
Eight years later, Colin goes to school and plays with his peers. He adores building with Legos, playing with his younger sister and going to the beach. Aside from his diminutive stature, a bystander would never know he had a life-threatening disease unless they took a look inside our home. Every day, Colin endures a strict regimen of treatments, many of which are deemed “preventative” in order to protect his lung function as much as possible. He does two to three nebulizer treatments a day, including inhaled hypertonic saline and pulmozyme; he does two to three chest-percussion therapies a day via a vest that essentially acts as a pneumatic jackhammer, thumping his back and chest with blasts of air through the vests inflatable bladder.
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He takes multiple vitamins, pancreatic enzymes at every snack and meal so that he can better digest food and absorb its nutrients. Recently, he also started on an appetite stimulant as he has historically struggled gaining weight. On April 14, 2016, his doctor inserted gastrostomy or “feeding” tube that will allow Colin to consume calories continually through the night as a way to get his strength and weight up. It was a terrifying prospect for us, but brave Colin handled it like a superhero.
Every day is a battle for our son. There are no days off; there are no guarantees. So we will continue to fight until CF stands for “cure found”.
-- Brian
