My Great Strides Story
My son Matthew was diagnosed with cystic fibrosis when he was 10 days old through the newborn screening process in Wisconsin. Cystic fibrosis (CF) is an inherited, chronic disease that affects the lungs and digestive system causing the body to produce unusually thick, sticky mucus that clogs the lungs, leading to life threatening lung infections, and obstructing the pancreas by stopping the secretion of enzymes.
Before Matthew was diagnosed, I thought I had a basic understanding about cystic fibrosis. But it turns out, that I didn't. I radically underestimated the amount of time and effort required just to keep Matthew healthy. Twice a day (when healthy), Scott or I sit with Matthew in an oversized chair in our family room. For 30 minutes, he wears a special vest attached to a vacuum cleaner sized machine that shakes the mucus off his lungs. During that time and afterwards, he inhales two medicines using a nebulizer that break down the mucus in his lungs. He takes an arsenal of medicines to help his body get rid of the mucus and digest food.
This year, our sweetheart was diagnosed with an autoimmune disease called Eosinophilic Esophagitis (EoE). Basically, certain foods cause white blood cells to go into over production in his esophagus, which becomes inflamed, swollen and over time can narrow dangerously. It makes eating more difficult -- especially for such a picky eater, who needs to maintain a healthy BMI. It's also been difficult to control the EoE without using steroids (which cause extreme anger). As of now, his path forward is still unknown.
This year has been difficult to say the least, but a few things have helped. Not the least of which is the love, support and encouragement from our family members throughout the continent and our friends (both near and far). Matthew also managed to eradicate the Pseudomonas Aeruginosa bacteria through many, many months of extra inhaled medications.
Also, several months ago during my morning prayer, I experienced a major attitude adjustment. On my grumpy days, I'd inwardly complain about the "wasted" time Matthew spent using his vest and about the 10+ medicines filled by 3 different pharmacies that I had to administer, manage and remember to refill. Suddenly, I realized that having an arsenal of medications and medical equipment (like our vest and nebulizer) was an amazing privilege -- not a burden. I thought about all the moms throughout the generations who would've moved heaven and Earth just for enzymes to help their children digest food, let alone medicines that help to thin the mucus or open airways. Suddenly, my perspective changed.
Most of these medicines and equipment that Matthew uses were created and refined over the past fifty years -- that's just one or two generations before Matthew's time. Many were also funded in part through private donations by people who believed a wonderful and healthy future existed for adults and children like Matthew. If you are interested in making a 100% tax deductible donation to the Cystic Fibrosis Foundation to help bring new drugs to market, please click on the Donate To Me button.