The National Catholic Review
William Van Ornum
The surprising pro-life message of "Extraordinary Measures"
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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.

William Van Ornum is research and development director for the American Mental Health Foundation in New York.

Comments

Alyssa Moirano | 2/9/2011 - 6:34pm

I have never seen the movie "Extraordinary Measures," however, now I may have to watch it.  As a future special education teacher, this review really spoke to me. I work as a substitute teacher aide in B.O.C.E.S schools across Long Island. I have worked with children with emotional/behavioral disorders, Cerebral Palsy, Down Syndrome, Autism, etc., and needless to say, each child is different.  One of the most intense schools is Carman's Road.  Carman's road deals with the most physically and mentally disabled students.  Most are unable to walk unassisted, many are deaf and blind, the majority are nonverbal, and only a few can respond to their own names.  This school always puts things in perspective for me.  And every time I work there, I always say to myself, these children go home to parents. There are parents that every day have to make major decisions such as what to do with their child when school ends (at the age of 21).  How do you deal with a 13 year old child who is only expected to live to the age of 15? My heart goes out to those parents who are forced to answer these questions.

Sarmina Rutter | 2/15/2010 - 2:23pm

Thank you, William Van Ornum, for your review and thoughts on this very important issue. I work in a special needs classroom in a public middle school and have been quite appalled at the lack of help available within the Christian community for these children. There simply are no Christian schools where I live that have any sort of program for special needs children. If a parent of a special needs child applies to have their child enrolled at a Christian school, they will flat out be denied addmittance. This is something that I can't seem to wrap my mind around.  The state-run institutions are who welcome these children.


Working with these chidren has been the most rewarding experience. I feel very blessed and lucky to be a part of their lives. Thank you so much for writing this article. I hope that it may prompt many to reach out and open thier hearts to these beautiful and enchanting children among us all. 

Aimie Hunt | 2/15/2010 - 9:07am

the community of special needs with an open heart and mind, and the dedication to stay involved. Then the "how" to help is able to be clear, spontaneous, and come from the humanity written on our hearts, that the author speaks of.


Thank you for offering this profound point of view on the complexity of the "issue of the week" phenomena. Our  cultural tendency to allow ourselves the luxury of emontional manipulation by media, especially cinema, has had the effect of manicuring our involvement with those who have true special needs to the 40 minute compassion break. So many of us conveniently excuse ourselves from the growth, the gifts that would accompany the effort and inconvenience of  finding a way to act on that compassion. "I saw the movie" (similar to "I heard the sermon") and "wow, I felt for them" is where we end our involvement, feeling we have made enough gain by allowing our compassion this beginning. This awareness is only one step. The next is acting on that step.


 I am the daughter, wife and mother of people affected by Aspergers syndrome. This is not a severe difficulty, yet it is significant and completely affects all of thier lives and mine. I had no impulse on my own to reach out to special needs communities, it was not a choice. I struggle with the delicate balance of understanding and compassion that is required to live with those I love; it seems almost too much to ask that others, who are not affected, find in themselves that same measure. For everyone that does, however, make the effort, a true miracle occurs for my loved ones.


The first thing  I recognize about the special needs communities is how challenged they are, how much effort it takes to make it through a "normal" day, and how isolating that can be. I am sure others face that same recognition when wondering how to help. If those of us who live with and love those with challenges are often stymied, how can those on the "outside" fare better? Outreach takes consistancy, dedication, and willingness to grow personally, to move beyond pity and tollerance to true understanding. That requires involvement, despite the clear amount of effort that involvment would take. That means choosing to take our lives beyond the beginning point of being moved by compassion, and finding the courage, strength and humanity to grow that compassion into the miracle of love for our fellow humans, whoever they are.


It also means those of us in the special needs communities need to be clear about our needs, consistantly ask for the help we need, and be understanding of those who are initially daunted-we are aslo daunted. We all have an opportunity to grow, and we will all fall short time and again. In love, we prosper. That love is a choice,  a choice of action.

Laura Kangas | 2/14/2010 - 11:29pm

Thank you for this beautiful article which brings to light some very heartfelt situations. I will see this movie. I had my children in my late 30's and did not want to have the genetic testing. It seemed unnecessary. Fortunately, both of my girls are very healthy. My heart goes out to the children whom are born with these issues and the parents who have to face these challenges.

laura day | 2/14/2010 - 9:30am

 Thank you for this moving and practical response to a very important issue. Not only did it make me want to run out and see the movie but it really put me to thinking where I want to spend my time and charity dollar. Often the children are cared for and the families suffer deeply and forever, despite their love for their child.


I am blessed that my son, healthy and well, is off to college and a life of his own. Thank you for reminding me that many parents never get that chance


Laura Day

JANICE JOHNSON | 2/12/2010 - 6:59pm

Thank you, Mr. Van Ornum, for your excellent review of the movie and your comments.  For over 40 years I have lived  in that deep divide between rhetoric and reality  for families who care for children with special needs.  Both of my children who have special needs have lived with me their entire lives.  Now that I am getting older and less able to care for them, my deepest anxiety is what will happen to them when I am incapacitated  or die.  I have to rely on governmental programs as the Church does not, by anfd large, have anything to offer my family.  While I am avidly pro-life I am also very critical of the pro-life groups who should be in the forefront of  helping our families and are strangely missing.  I can name only one couple and a single woman friend who reached out to me in loving kindness.  And my  family's needs were well known in the parishes we belonged to.  I have given up on getting any kind of help for us, but there are many many young families (such as Kevin and Megan Clarke's family)  who need the kind of loving support that Catholics can and should give as part of the Body of Christ.    Why the disconnect between advocating for life of the unborn and then abandoning those families who give birth to a child with disabilities???  It is a sad commentary for me to say that I have been sustained throughout my parenthood by my Catholic faith and I have been abandonned by my church, the people of God.

Bernard Campbell | 2/9/2010 - 10:24pm

Another question William Van Ornum could have raised is the following: "Where have the pro-life people been on the health-care billl?"  I know after forty + years of advocacy for persons with disabilities, they are not silent.  Most are opposed to "government intervention", which provides care for all, such as, the health-care bill.

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