A grandfather’s first letter tells of love, loss and rare disease

Iam a lifelong resident of Camp Hill and Mechanicsburg. Nearly 50 years ago, at age 12, I was a newspaper delivery boy. Over the years I’ve placed classified ads, but I’ve never written a letter to the editor—until now.

In December, my daughter gave birth to our first grandchild, Catalina. From the very start something was wrong. She was in distress, and for almost two months no one could tell us why. For almost two months, no one could tell us why she was in distress until we eventually learned she had Zellweger spectrum disorder, a rare recessive genetic disease.

Fewer than 1,000 children worldwide are affected, yet for us it was no statistic—it was our granddaughter. Catalina fought every single day of her short life. She lived only four months, but she was loved beyond measure. My da