Deborah Horwitz & Paul Nierman
Our grandson is almost 10 and finishing fourth grade, still learning remotely due to the pandemic, as are a few other students in his grade. He keeps up with his friends on the computer and occasionally hangs out with them outdoors, masked and socially distanced, and spends a lot of time with his almost 5-year-old sister who still worships him. His activities are all remote, too: children’s musical theater, piano and guitar lessons, art and improv classes. He reads lots of books, loves making elaborate Lego creations and piecing together complex jigsaw puzzles. Last summer he played in two baseball and two soccer teams under team health safety protocols, and he continues playing in these same teams in 2021.
He remains "healthy" because his parents are 150% diligent, making sure he continues to take over 25 treatments each day (multiple enzymes, antibiotics, inhaled nebulizer treatments, breathing treatments & airway clearance therapies, basic nutrition through a port in his tummy).
But we still worry. What if this year, he catches a cold he can't shake and his lung function drops and doesn't recover? What if this is the year where he catches a more serious CF germ and has to spend weeks in the hospital and months in extra treatment? There is progress in research, but still no treatment or cure for his rare mutation.
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