By: debbie lynn elias
Pompe Disease. How many of you have heard of it? I hadn’t. But thanks to Harrison Ford, who was inspired by an article written by Pulitzer Prize-winning author, Geeta Anand, and then later her book entitled “The Cure: How a Father Raised $100 Million and Bucked the Medical Establishment – in a Quest to Save His Children”, what has long been described as an “orphan disease” is now brought to the forefront with this emotional and moving story of the John Crowley family in EXTRAORDINARY MEASURES. Executive produced by Ford (who also stars) and Nan Morales along with his long time partners, Michael Shamberg, Stacey Sher and Carla Santos Shamberg, and calling on the talents of Brendan Fraser, Keri Russell and irrepressible newcomer Meredith Droeger, EXTRAORDINARY MEASURES is a film that champions perseverance, tenacity, personal courage, humanity, science, a belief in miracles and above all, hope.
For a little education, Pompe disease is an inherited disorder caused by the buildup of a complex sugar called glycogen in the body’s cells. As the glycogen accumulates in certain tissues, it impairs their ability to ability to function normally, leading to progressive muscular degeneration, enlarged heart, enlarged liver, heart failure and premature death. Various types of Pompe, one is infantile onset that begins within a few months of birth and for years recognized that death would come within 2 or 3 years, while others are known as late onset with symptoms not appearing until childhood, adolescence or even adulthood. The name, Pompe Disease, comes from Dutch pathologist J.C. Pompe, who first described a 7-month-old infant who died suddenly from the disease in 1932. Given this knowledge, it’s to see why Ford wanted to bring John Crowley’s story to the big screen.
John and Aileen Crowley are your average upper middle class couple. Happily married they live in an affluent suburban neighborhood in a beautiful home with their three wonderful children. John, an executive with a drug manufacturer, makes a nice living and has a superb health insurance plan, one that pays the bulk of the family’s medical bills for the 24-hour care needed by two of the Crowleys three children. Both Mehan and Patrick are afflicted with Pompe Disease. Confined to wheelchairs and relying on respirators, both children have already surpassed the survival odds, with Megan turning 8. Unfortunately, the doctors have told John and Aileen that she won’t live past 9. With the clock ticking for his beautiful little girl, John Crowley becomes a man with a mission.
Pompe Disease is an “orphan disease”, so named as the result of the Orphan Drug Act of 1983, an Act designed to encourage the development of drugs that have a smaller market due to their treatment of “orphan diseases”, diseases that affect less than 200,000 persons in the U.S. or that affect more than 200,000 but for which there is no feasibility of profit given the expense of research, testing and limited use. However, the market potential for an “orphan drug” can also be enormous considering the high cost of drugs per patient and that insurance will generally pay this cost. Thus, no one is even looking for a cure or treatment, no one except a handful of scientists Not acceptable to John Crowley. Somewhere, somehow, there must be a way to save his children.
As John digs into global research and treatments for Pompe, one name tops the list above all others – Robert Stonehill. Ahead of his time, his science is “light years” ahead of others. Unfortunately, he has no funding and his research works only in theory and as Stonehill himself puts it, “I’m a scientist. I don’t deal with people.” As resolute as John Crowley is to help his children, that same resolve and obsession permeates Robert Stonehill, making them perfect counter-parts. Joining forces, Crowley and Stonehill forge ahead to develop Stonehill’s theories. Calling on Crowley’s expertise in business and Stonehill’s expertise in science, the two become an unstoppable force.
Stretching their acting wings, the performances by Harrison Ford and Brendan Fraser are a compilation of the Little Engine That Could. As Robert Stonehill, Ford first struck me off guard and I was unsure of his performance, but the more I watched, the more involved I was with Stonehill. Ford really went lengths to create the eccentric traits and habits of a scientific genius. When I stopped to think about many of the researchers I personally know, he nailed their personas dead on, establishing the fact he is not a “people person” but while “a medical doctor, [he] doesn’t see patients. His interest in the disease is on a cellular level, an intellectual puzzle for him.” 
Although he met with the real Crowley children, Ford was “looking for the reality of the character [of Stonehill] as opposed to studying how Pompe affects the individual and the family. “I went to the University of Nebraska. I visited other scientists that John [Crowley] led us to via a medical company that he now runs. [I] spent my research time working with scientists to figure out how to get science which is something you practice in your head, out onto the screen. Figure out ways that we could accomplish the description of the science in a way that wouldn’t slow the movie down. . . We phrased out what was necessary in a way that I was very happy with.” All of his homework paid off in spades making Stonehill a more than intriguing character study. Some of the highlights of Ford’s work include scenes where he is enraged and screaming, his initial scene with Meredith Droeger (which is beyond charming) and a final scene in the hospital. Brilliantly played. Interestingly, Stonehill is not an actual player in the Crowley saga. Stonehill is a compilation of 4 or 5 actual scientific researchers involved in the development of a treatment for Pompe, not the least of which is Dr. Hung Do, the doctor with whom John Crowley himself has worked with from early on.
As keenly played as Ford’s scientific obsession is, equal is the obsessive drive Fraser brings to John Crowley. While at times Fraser seems uncomfortable in Crowley’s skin, during family scenes with Keri Russell and the children, his eyes and face are luminous with joy and love. Spending time with the Crowley family, Fraser had met John before meeting Megan and Patrick at the screening of Fraser’s film “Inkheart”. “I didn’t have an appreciation for truly how fragile they are. They are on life support systems. They are in chairs. There are respiration units. Pompe is degenerative disease that causes the muscles to atrophy and organs enlarge, the heart in particular. But the one thing it does not affect is certainly the mind. “ For Fraser, just listening to him tell anecdotes about Megan Crowley, you see his face light up and his voice brim with an almost paternal pride. His amazement with the indomitable spirit of these children and this family is evident and it carries over into his performance.
A solid player is Keri Russell who has really fallen into the maternal role with her recent performance in “Bedtime Story” and now EXTRAORDINARY MEASURES. As Aileen Crowley, she brings a normalcy to family life. But the most indelible work comes from newcomer Meredith Droeger. As Megan Crowley, she is incredible. A whirlwind force to be reckoned with, Meredith is a face to watch in the future!!!! And to see her go toe-to-toe with Harrison Ford – priceless. I absolutely love her.
Written by Robert Stanley Jacobs and directed by Tom Vaughn, adapting the Crowleys’ story was anything if not challenging. Compressing a multi-year process into the space of 100 minutes, for Jacobs, “it’s always tricky when you do a true story because you have a 350 page book, very well researched and complete, that when translated would be a 14 hour film. We had to really pick out what are the emotional sentiments that we wanted to capture.” The passage of time is seamless and believable, although I felt some holes in the time line and story in one or two instances associated with Crowley’s travels back and forth from Nebraska to then Seattle and Nebraska. One has to pay attention to follow the jumps.
A key element to this film is the science aspect which was of the utmost important to Ford. “We gave the audience credit for some intelligence and didn’t sit ‘em down to give them a lecture.” Thanks to consultation with researchers and doctors, the science relayed in EXTRAORDINARY MEASURES is credible and accurate. A large part of the science depicted is attributable to the creation of Stonehill, a compilation of several real life researchers and doctors. According to Vaughn, “We knew that we were developing this character for Harrison. We all worked together on developing the character. Partly led by what would be entertaining, what would be a fun character. What elements from those other researchers we could bring together to make him jump out of the story…and show in that world of research scientists.” For Jacobs, he first “had to identify the emotional sentiments of John [Crowley] and then create a composite character for Dr. Stonehill which will allow us to express all those points of the journey through a symbiotic relationship between John and Dr. Stonehill.” 
Set design is outstanding with the creation of the laboratories and particularly notable is the use of various lighting modes in different areas of the buildings. Production Designer Derek Hill and Set Decorator Densie Pizzini worked closely with the folks at the 177 acre Nike World Campus in Beaverton which served as the cold, sterile research facilities of the corporate drug world. Medical equipment abounds in this film, and all was shipped in from manufacturers and vendors across the country to retain authenticity. Oregon Health and Science University, a center for Pompe treatment, also plays a significant part in the film as not only does it provide a hospital setting, but OSHU doctors served as consultants and participated in shooting several scenes. 
One always hears about families that try to make a difference with disease treatment when they are personally affected, generally in the form of asking Congress or other agencies for assistance or better help, but to actually see one man, one family, make something happen and come to fruition is beyond encouraging. While the Crowley children are depicted in the film as being in mid-childhood, in reality, Megan Crowley was diagnosed at 15 months old with Pompe. A few months later, John and Aileen were told newborn Patrick was also afflicted and that both children “wouldn’t live to be 2.” Facing the worst nightmare of any parent and knowing they wanted their children to live, John and Aileen made a conscious decision to actively do whatever they could to help save their childrens’ lives. According to Ford, “John is still doing research and the benefits of his research are now available. The enzyme therapy that we talk about developing in the film, now when administered to infants, a lot of them grow up with pretty normal lives. “ As of the release of EXTRAORDINARY MEASURES, Megan Crowley is now 12 years old and Patrick Crowley is eleven.
Do not be turned away by the scientific aspects of this film. Embrace them. Embrace the significance of John Crowley, scientists like the fictional Dr. Stonehill, and the way corporate greed hinders medical care in this country. EXTRAORDINARY MEASURES is an extraordinary story about some extraordinary people. An intelligent film that shoots an IV of humanity straight into your heart.
Robert Stonehill – Harrison Ford
John Crowley – Brendan Fraser
Aileen Crowley – Keri Russell
Megan Crowley – Meredith Droeger
Directed by Tom Vaughn. Written by Robert Stanley Jacobs inspired by Geeta Anand’s 2006 book, “The Cure: How a Father Raised $100 Million – and Bucked the Medical Establishment -In a Quest to Save His Children.”
