As we reported in Part I, Caleb was 6 years old when he was diagnosed with Cystinosis. Today he is 13, and no longer runs into the arms of his grandparents to greet them, as you might expect from a 13-year-old turning into a young man, but he is still a generous and kind boy.
He is fortunate to have parents/step-parents who care for him deeply, and a large family of three brothers, two sisters, and another baby on the way. He is helpful with the younger siblings, but admits two-year-olds are kind of a hassle! He lives with Mom and Stepdad in Karlstad, MN, and Dad and Stepmom are in Grand Forks, an hour away, so they do mostly weekend visiting.
His Mom thinks "out of the box" and for the first few years of the diagnosis had him on a vegan diet with fruit and vegetable juicing. It was difficult at times to coax him to drink the juices, although if Papa Jim was around, he would do it right alongside Caleb, producing the "spoonful of sugar" effect popularized by Mary Poppins. This diet reduced emergency room visits and hospitalizations for dehydration. Simply put, his Mom's priority has been Caleb's quality of life, and she has been a remarkable caregiver.
Despite frequent absences, Caleb has managed to be an A student, though any obvious flu bug going around means he does not attend, so as to avoid possible infections. He also misses school for doctor appointments in Minneapolis, some seven hours from Karlstad. Yet he's had a positive attitude towards this despite the frequent long haul for medical trials. A couple years ago he told his Mom, "Because of my disease we do things differently. Here we are at an NBA game in Minneapolis, and during the medical trials I've been in, we get to stay at really nice motels with pools!"
No doubt he has been a warrior with heart, and in the next Part of this series, we'll talk more about his grandparents and what the disease has meant to them and their faith.
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