Is there such a thing as natural law? Is there a common call to compassion inscribed in all of our hearts, a hardware that no software can change, which can be recognized by anyone in any human age? What does natural law demand of us, especially in regard to the care of children suffering from rare genetic disorders?
These are weighty questions, usually reserved for the classroom or the pulpit, certainly not the multiplex. Yet here we have “Extraordinary Measures,” a new film starring Harrison Ford, the erstwhile archeologist, fugitive and spy, and Brendan Fraser, Adam Sandler’s sidekick from “Airheads.” Ford is a doctor, Fraser a father, each on a mission to cure two young children of a rare genetic disease. Along the way they make a compelling case that we are called upon to care for all God’s children, however they happen to be made.
Fraser and Keri Russell play John and Aileen Crowley, a married couple who have not one, but two young children destined to die before age nine from Pompe Disease, a rare genetic disorder. The disease causes a build up of sugar in the muscle tissue, which proves fatal when the heart, lungs and other organs stop functioning. Like Cystic Fibrosis, Down Syndrome and other genetic diseases, Pompe Disease can now be detected in the womb; as a result, these babies are at extremely high risk for abortion. One of the most, well, extraordinary aspects of “Extraordinary Measures” is that John and Aileen welcome a second child with Pompe into their family even though they know the future they face.
Any parent of a child who is ill or, in fact, anyone with a sense of compassion can easily enter into this beautiful story. Fraser has lost the easy banter he displayed in “Airheads,” and Russell is no longer the doe-eyed beauty exploring New York City in TV’s “Felicity.” As Dr. Robert Stonehill, the dour-faced Ford looks more like Job than the playful characters he portrayed in the films of George Lucas and Steven Spielberg. Supported by the Crowleys, the good doctor sets out to find the funding necessary to develop a cure for the boys’ disease.
“Extraordinary Measures” gives a glimpse into the lives of families struggling to provide a good life for children who, in most instances, would not be given this chance. Fraser and Russell movingly convey the suffering and resignation of parents who know their children face an early death, with little to do but watch and try to enjoy the short time left. Ironically, the greatest help the Crowleys receive is not from churches or pro-life movements, but from forces often demonized—insurance companies and pharmaceutical researchers. It is these institutions that help fund the research that could lead to a cure.
Sadly, this reflects the reality of parents who decide to raise a child with genetic anomalies. In most cases, help comes not from churches but from mandated government programs, Medicaid or private insurance, and if a family is especially blessed, grandparents or other family members. (Of course, there are exceptions. The Cardinal Hayes Home in Millbrook, New York, for example, provides excellent faith-based programs for special needs children that continue throughout their lives.)
“Extraordinary Measures” illustrates the deep divide between rhetoric and reality for families caring for children with special needs. Pro-life groups rightly call for parents to welcome all children into their lives, no matter how sick a child might be, but do we offer enough support to the parent who make these brave decisions? Their lives, after all, will never be the same.
In some enlightened parishes, CCD classes and youth groups include special needs children. But unfortunately they are not common. And how many parishes offer programs like volunteer baby-sitting for parents who need a night out? Or child care when parents need to run errands or go to work? How often do buses of pro-life groups visit severely retarded children who must live away from their families in group homes? Every state capital has seen these buses arrive, but how many state developmental centers are destinations for these same volunteers?
It should come as no surprise that by the end of “Extraordinary Measures,” the Crowley children receive the care they need. What goes unsaid, of course, is that the family will need a lifetime of support, and it is far from clear who will provide it for them. As Christians we know where that support must come from: the answer is inscribed in our hearts. How strange that it takes a Hollywood film to remind us of this fact.