I've mentioned once or twice before that I'm an alumna of the University of Miami. On Saturday, I attended Miami's homecoming game against UNC, and while the football was great (and we won), what really made it special was an appearance by Jim Kelly. Kelly was a star quarterback for the University of Miami in the early 1980s and for the Buffalo Bills until 1996. Since most SPL supporters are young and this may be before your time, allow me to share a word or two about why Jim Kelly is amazing. It has nothing to do with his skill on the field, and everything to do with his life-saving advocacy with Hunter's Hope Foundation.
Jim's son, Hunter, had a rare genetic disorder called Krabbe's disease:
At first, Hunter seemed to be a perfectly healthy infant. However, in the weeks that followed, he grew extremely irritable, and as things grew worse, the Kellys sought answers to relieve their son’s pain. After an exhaustive battery of tests, a leading pediatric neurologist, Dr. Patricia Duffner, shared the devastating news:
“Your son has been diagnosed with a fatal genetic disease called Krabbe Leukodystrophy. There is no treatment for the disease and no cure. The average life expectancy for babies diagnosed with infantile Krabbe is fourteen months. Hunter will probably not live to see his second birthday. We can help you make your son more comfortable but…”Hunter did exceed the life expectancy Dr. Duffner predicted, but his life was still tragically short: he passed away at the age of 8. During his short life, he was profoundly disabled.
The Kellys founded Hunter's Hope to fund research into the possible treatments and cures that were unknown when Hunter was diagnosed. Too often, work on lethal genetic disorders is focused not on curing the disease, but on developing prenatal tests so that those afflicted with the disease can be aborted (ostensibly to spare them suffering). But the Kellys—who I should, in all fairness, acknowledge are devout Christians—did not take that approach.
And in fact, a cure has emerged for Krabbe's disease: umbilical cord blood from a healthy baby is transplanted into the affected child. But an umbilical cord blood transplant only works if done early, before the person with Krabbe's disease is symptomatic. Therefore, Hunter's Hope does advocate for testing: but in newborns, not in the preborn.
In a similar vein, I'm reminded of Dor Yeshorim, which seeks to prevent the occurrence of genetic diseases in Jewish populations. Again, they do so in a life-affirming way, not through prenatal "search and destroy" missions. Instead, they screen dating couples through a rather ingenious system that preserves anonymity:
When two members of the system contemplate marriage, they contact the organization and enter both their PINs. When both carry a gene for the same disorder, the risk of affected offspring is 25%, and it is considered advisable to discontinue the plans. In the context of shidduchim, the "carriership check" is often run within the first three dates, to avoid disappointments and heartbreak. Ideally, it should be checked prior to the first date, as there are no charges applied to any particular query. Some couples wait until the third through fifth date because of the perception that participants go on too many first dates to make a pre-first date query viable and asking for a check after a first date indicates that the requester is over enthusiastic about the match.The pro-life community should do what we can to support innovative, non-abortive approaches to genetic disease like those taken by Hunter's Hope and Dor Yesharim. There is a critical difference between preventing genetic disease, and killing those who have genetic diseases. The former should be something we all can agree on.