Deborah Horwitz & Paul Nierman
Our 9-year-old grandson is in 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 4-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, and although soccer and Little League were cancelled spring 2020, he played in two summer baseball and soccer teams under team health safety protocols.
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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