For Genetic Illness, A 'Cure' Can Be A Conundrum
San Antonio resident Sheila Black and two of her children have a genetic illness called X-linked hypophosphatemia, or XLH.
"...to be human often entails finding ways to make what appears a disadvantage a point of strength or pride. XLH does not shorten life-span. It makes walking difficult, and we XLHers suffer more aches and pains than most people. We also look different. When I was a child, this was the main reason I longed for a cure — so I could look like everyone else. Now it is the part of my XLH I cling to a little stubbornly, why I hesitate and wonder: Who would I be without my XLH? Who would my children be?
What is a superior person? What might be lost in the rush toward creating one?"