Drama
Synopsis
After his two youngest children contract a fatal disease, a man (Brendan Fraser) joins forces with an unconventional scientist (Harrison Ford) in the hope of finding a cure.
Cast: Brendan Fraser, Harrison Ford, Keri Russell, Meredith Droeger, Diego Velázquez, Sam Hall, Jared Harris, Patrick Bauchau, Alan Ruck, David Clennon, Dee Wallace, Courtney B. Vance, Ayanna Berkshire, P.J. Byrne, Andrea White, G.J. Echtemkamp
Producer(s): Double Feature Films, CBS Films
Crew: Director - Tom Vaughan, Screenwriter - Robert Nelson Jacobs, Producer - Michael Shamberg, Producer - Stacey Sher, Producer - Carla Shamberg, Executive Producer - Harrison Ford, Executive Producer - Nan Morales, Cinematographer - Andrew Dunn, Film Editor - Anne Coates, Production Design - Derek Hill, Original Music - Andrea Guerra, Costume Designer - Deena Appel, Casting - Margery Simkin, Art Director - John Richardson, Set Decoration - Denise Pizzini
Distributor: CBS Films
Release Date: 01/22/2010
Running Time: 106 minutes
OFFICIAL SITE
| PG | Parental Guidance Suggested |
Production Notes:
- Notes provided by CBS Films. -
CBS Films Extraordinary Measures is inspired by the true story of John Crowley, a man who defied conventional wisdom and great odds, and risked his family's future to pursue a cure for his children's life threatening disease.
SYNOPSIS
From his working class roots, John Crowley (BRENDAN FRASER) had finally begun to taste success in corporate America. Supported by his beautiful wife Aileen (KERI RUSSELL) and their three children, John is on the fast track. But just as his career is taking off, Crowley walks away from it all when his two youngest children, Megan and Patrick, are diagnosed with a fatal disease. With Aileen by his side, harnessing all of his skill and determination, Crowley teams up with a brilliant, but unappreciated and unconventional scientist, Dr. Robert Stonehill (HARRISON FORD). Together they form a bio-tech company focused on developing a life-saving drug. One driven to prove himself and his theories, the other by a chance to save his children, this unlikely alliance eventually develops into mutual respect as they battle the medical and business establishments in a fight against the system and time.
But, at the last minute, when it appears that a solution has been found, the relationship between the two men faces a final test the outcome of which will affect the fate of John's children.
CBS Films Presents a Double Feature Films Production Extraordinary Measures starring Brendan Fraser (Crash, Gods and Monsters), Harrison Ford (Indiana Jones and the Kingdom of the Crystal Skull, What Lies Beneath) and Keri Russell (August Rush, Waitress). The film is directed by Tom Vaughan (What Happens in Vegas, Starter For 10). Robert Nelson Jacobs (The Water Horse, Chocolat) wrote the screenplay, which was inspired by the book The Cure by Pulitzer Prize-winning writer Geeta Anand. The producers are Michael Shamberg, Stacey Sher and Carla Santos Shamberg (Freedom Writers, World Trade Center, Erin Brockovich). Harrison Ford and Nan Morales are executive producers. The director of photography is Andrew Dunn, BSC. The production designer is Derek R. Hill. The film is edited by Anne V. Coates, A.C.E. and the music is by Andrea Guerra. CBS Films debut release, the film will open in theaters on January 22, 2010.
This film has been rated PG by the Motion Picture Association of America for Thematic Material, Language and a Mild Suggestive Moment.
www.extraordinarymeasuresthemovie.com
FINDING AN EXTRAORDINARY STORY
For years, Harrison Ford and producers Michael Shamberg, Stacey Sher, and Carla Santos Shamberg had been seeking a project on which they could collaborate. Six years ago that search ended, when Ford read Pulitzer Prize-winning writer Geeta Anands Wall Street Journal article, and later Anands book entitled The Cure: How a Father Raised $100 Million and Bucked the Medical Establishment in a Quest to Save His Children), on John Crowley and the Crowley family. Captivated by multiple themes, Ford recognized the makings of a movie in this compelling material.
I thought Geetas book had something to say about personal courage, initiative, parents love, and the power to overcome extraordinarily difficult circumstances, remembers Ford. If we could wrestle this into the shape of a movie, we would be bringing a story to the screen which would enrich peoples lives.
The producers agreed. Here was an opportunity to share an engaging, truthful story filled with emotional and physical obstacles a story framed by one familys crusade to overcome great adversity. What struck us about John is that hes a real-life hero, says Shamberg. He went on a courageous journey and risked everything, along with his wife Aileen, to do what was best for their children.
The Crowley familys story would be perfectly at home at Double Feature Films, Shamberg and Shers production company. A number of successful films inspired by real life subjects adorn the companys notable filmography including Erin Brockovich, Freedom Writers and World Trade Center.
The best true stories read like fiction and Geetas book was definitely no exception, notes Sher. You think, Nobody would buy this if it wasnt true or, as with our film, inspired by true events.
Though the Crowley family had already grown comfortable relating their story to Anand, there was some initial hesitation when Hollywood came calling.
My dad was a cop and my mom was a waitress, says John Crowley. I didnt grow up in the Hollywood scene so I was a little skeptical at first. But the producers had done some wonderful films and have some very unique experiences in producing films inspired by real life stories so that made us more comfortable. And also Harrison was involved from day one which made the project all the more attractive.
With the Crowleys on board, a collaborative effort to bring the story to the screen was about to begin.
TWO MEN, ONE MISSION: THE SCIENCE OF ADAPTING THESTORY FOR THE SCREEN
Turning this familys journey and The Cure into a two-hour feature presented a delicate balancing act. The timeline of events, which encompassed several years, had to be condensed and yet the story still needed to engage audiences in the arduous, groundbreaking scientific process that saved the Crowley children. The task would indeed be both challenging and rewarding. The producers met with Academy Award-nominated screenwriter Robert Nelson Jacobs and quickly realized they had found the right person to adapt the story.
He had written Chocolat, notes Santos Shamberg. Hes a very sensitive writer. The process of turning Geetas book and the Crowleys story into a movie would be quite a long process. Robert came up with a good script within a year, which is very lucky.
There are several things that moved me creatively and emotionally to tell this story, says Jacobs. I was very drawn in by this family. They deal with adversity with a lot of grace and humor. I think thats an important story to tell.
Jacobs found Anands book to be an invaluable resource and the journalist/author to be extremely generous with sharing her research. But Jacobs also immersed himself in his own extensive research of the family.
Though the films main emphasis was to capture the familys extraordinary journey to overcome the odds, Jacobs also felt it important to reinforce that this was a family in a day-to-day routine.
As Jacobs perceives, The triumph of this family would only be magnified by also showing the chinks in the armor, the same vulnerabilities and frailties and flaws that any other family has. All parents need to make decisions about whats in the best interest of their kids. For the Crowleys these were literally life and death decisions.
Compressing the storys timeline of events included assessing how to best represent the numerous people who assisted John in his development of the drug that would save his children. There were many people who helped John along the way, from scientists to business men. And there were a number of doctors for whom John raised money, explains Jacobs. We composited all of these people into one character Dr. Robert Stonehill. John is very straight ahead, and Dr. Stonehill marches to the beat of his own drum. I realized that putting the two of them together would make sparks fly. It would create a lot of dramatic tension.
Ford (who both stars and serves as executive producer on the film) saw Dr. Stonehill as an intriguing opportunity both in storytelling and as an actor. Hes a composite of people who played different parts in the Crowleys story but, for me, hes also a composite of things Ive observed in my research. He represents aspects of a scientist, and also aspects of a loner, an iconoclast, explains Ford. And his relationship with John Crowley is an interesting kind of relationship for me as an actor. Their relationship is sometimes contentious, not at all smooth, but there are also moments of co-joined purpose. Its a complicated dynamic.
Its two men with a mission; one to save his family, the other to prove hes right, elaborates Shamberg. Two men against the system; I dont think you can go wrong when you have underdogs fighting for something right. And, given the current health care debate, the public seems particularly primed to root for characters who take control of important issues, such as this one, that affect the fate of their loved ones.
It is important to understand orphan drugs to understand how the work of these two characters progresses. The Orphan Drug Act of 1983 was passed to encourage the development of drugs that have a small market due to their treatment of orphan diseases (defined in the U.S. as a disease that (a) affects less than 200,000 persons in the U.S. or (b) affects more than 200,000 persons in the U.S. but for which there is no reasonable expectation that the cost of developing and making available in the U.S. a drug for such disease or condition will be recovered from sales in the U.S. of such drug*). Under this law, companies that develop an orphan drug may sell it without competition for 7 years (there are also tax incentives). Pompe Disease is an orphan disease and the drug that John Crowley and Dr. Stonehill develop through the course of this story falls under this orphan drug status. The market potential for an orphan drug can be enormous because of the general high cost of these drugs per patient (individual yearly treatment can cost hundreds of thousands of dollars a year), which insurance often covers. This explains how John and Dr. Stonehill are able to raise venture capital and ultimately sell out to a larger pharmaceutical company (Zymagen).
To build Stonehills character while authenticating the science in the script overall, Ford and Jacobs turned to experts in the field for help and credibility.
Ive been gratified by the willingness of the science community to help us work out ways to get the story more correct on a scientific level, says Ford. In particular, to work out a way of representing the scientific process which is largely practiced in the head.
Finding ways to give physical form to this cerebral process was necessary to tell the story, yet the scientific dialogue was important both for accuracy and as a window into Stonehills character. When you see Harrison explaining the science, its really the subtext thats important -you see a scientist who is passionate about what hes doing, says Jacobs. It was crucial for Ford and Jacobs to really understand the nuances of the science to then simplify the process for the audiences understanding.
One scientist who was instrumental in this research was Dr. Hung Do who worked with John Crowley from very early on and continues to work with him to this day. The filmmakers spent a considerable amount of time with Do, who consulted on the film from story development through production. He also shed light on what it was that John Crowley brought to the table for the scientific community that upped the level of motivation for a notoriously stoic (albeit by definition) group of individuals. He made it about much more than research, says Do. This was his kids lives. That really brought it to a whole other level for us scientists.
For all of the factual research and timeline compression, the emotional component and spirit of the family was indeed the foundation of this script. Jacobs worked tirelessly to build a screenplay that conveyed both the physical and spiritual journey for all involved.
You have to give real credit to Bob Jacobs, says Shamberg. He took the essence of what was poured into each juncture over years and years, and made it dramatic by compressing timelines and combining characters.
Years of success as a screenwriter and positive feedback from the filmmakers did little, however, to ease Jacobs nerves once it came time to deliver the script to the Crowleys for their read.
This film is really the first that Ive written thats inspired by a true story and a real family, says Jacobs. It was important to honor the spirit of that family. So it meant a lot to me when the Crowleys read the script and said Yeah, you had to fictionalize in places, and you had to change the timeline, but we feel like youve captured the spirit of our family. That was probably the nicest compliment that Ive ever received as a screenwriter.
* From U.S. Food and Drug Administration website
FINDING AN INSPIRED DIRECTOR
It was 2006 and the coming of age film Starter For Ten, by a young director named Tom Vaughan, was creating a lot of buzz. Shamberg, Sher and Santos Shamberg went to a screening in Los Angeles. Tom demonstrated a perfect sense of tone, subtlety and emotion, as opposed to sentimentality. And a wonderful sense of humor, recalls Sher.
A meeting with Vaughan was set at Double Feature Films. With Robert Nelson Jacobs script recently receiving the stamp of approval, the producers gave Vaughan a draft of Extraordinary Measures to read.
When I read the script I immediately had great confidence in the power of the story, says Vaughan. He was struck by the messages of faith and hope, exemplified through the Crowley familys own unfaltering fortitude when it appeared all the choices had run out. The story really gripped me from beginning to end. And it kept surprising me. It had twists and turns that I didnt see coming, and thats refreshing.
Fords attachment as Dr. Stonehill was also a draw for Vaughan. It seemed such a perfect fit for him. It felt like something I hadnt seen him do before. I knew hed be great in the role.
Santos Shamberg notes that a certain familial connection to the scientific field may have also drawn Vaughan to the material His dad is a scientist so, from a very early age, Tom has had a real understanding of what it means to spend ones life researching.
Vaughans approach to the material was directly in line with the rest of the teams vision. The trick with a movie like this is to make it as entertaining as possible, but not to make it so emotionally unbelievable that you throw the feelings in peoples faces, says Shamberg. We knew Tom could achieve that. Hes just really good at that type of filmmaking.
CASTING A FAMILY UNIT
With Ford set to play Dr. Stonehill, finding the right actor to play John Crowley was essential. With a dramatic film like this, the balance of the cast is very, very important, explains Vaughan. The characters of John Crowley and Dr. Stonehill are very different but have to come together to achieve their common goal. It was important to find someone who could go head to head with Harrison on screen.
The filmmakers had admired Brendan Frasers dramatic work in such films as Gods and Monsters and Crash. They knew he had the stature to play John Crowley so they sent him the script.
Fraser saw Extraordinary Measures as a unique opportunity: Ive made a lot of different kinds of movies, but I think this one stands apart from other work Ive seen come my way. Sometimes in life the answer is no and sometimes its the right answer, the answer you have to live with. But John Crowley actually said, No is not acceptable. Im going to find a way to turn no into a maybe, and then maybe into a yes. If he was going to go down, he was going to go down swinging. Those are the ear markings of a true hero.
Harrison, Tom, and Brendan got together and had a work session. As Sher recalls there was instant chemistry.
A big thumbs up to the casting choice of Brendan came from John Crowley, himself (who has a small cameo in the film, ironically portraying one of the businessmen to whom Crowley and Stonehill pitch for funding). Brendan is terrific. Hes capable of playing such a range of emotions, going from a serious businessman and entrepreneur, to being a dad, to being a husband. Hes uniquely suited to the role.
Fraser felt honored to have the opportunity to bring John Crowley to the screen. He was also thrilled by the opportunity to work with Harrison Ford. Hes the actor I was inspired by, like so many legions of actors were. He was the individual who singularly inspired me to say I want to be on screen, Fraser beams. You need someone in the back of your mind to call a role model; someone you would hope to one day emulate in the type of choices you make. For me, it was primarily Harrison. Hes a great guy and Ive thoroughly enjoyed working with him. I feel Im better for it because Ive learned a lot of things from him along the way.
Ford found Fraser to have the perfect attributes for the role of John Crowley. Brendan brings understanding and great capacity to the telling of this story. Were very lucky to have him.
Though the film is largely driven by John Crowley and Dr. Stonehill, Aileen Crowley is in many ways the third hero of the story. Aileen Crowley said I will take care of the children and give them a normal life, while you go out and start the company. That will be our deal together, explains Shamberg. She acts every day like a normal mother but under the surface shes very tough.
Vaughan knew the casting of this role was crucial: Its a tough role. There is a version of this story where Aileen and the domestic side get sidelined since the two men on their mission is more prominent. I needed to make sure I had an actress who was powerful enough and had the chops to show all aspects of the domestic side of the story, including all the subtleties and the humor which are very important.
They found the perfect actress to play Aileen in Keri Russell.
Keri was the first person we met, says Sher. We werent casting the part yet, but she had read the script and was really moved by it. We loved her. We couldnt get our meeting with Keri out of our minds. We finally just said to her We know we met you first and we werent even going through our process yet but we really want you.
The first time I read the script, it was incredibly emotional, recalls Russell. To want something is one thing, but to go after it and create it, its incredible. Every parent knows that no matter if your kid has a cold or the flu, or in this case a very rare disease, you want to do something for them. The fact that these parents acted on that instinct to this extent is extremely moving.
Aileen was thrilled with the casting choice. How could I not be? Shes beautiful, so sweet and nice. She spent an afternoon just hanging out with the kids, getting to know them. She didnt have to do that.
Its a movie that asks a lot of the actors, says Vaughan. It requires them to run through a whole range of acting abilities and skills and it all has to be grounded in truth and reality. Vaughan is quick to praise his casts professionalism, dedication, and range of emotional depth. It was critical to choose the right people for these multi-layered roles. If you dont have the right people in your movie, then its very hard to direct them to give the right performance. And we got really lucky with Brendan, Harrison and Keri and the children are phenomenal.
The casting director saw approximately 800 kids before they landed on Meredith Droeger for Megan Crowley (the Crowleys daughter). They saw hundreds more for John Jr. and Patrick (the other two Crowley children), for which they cast Sam M. Hall and Diego Velazquez respectively.
John Crowley found Meredith Droeger especially convincing. Megan has an incredibly dry wit and sarcastic sense of humor. Meredith captures that perfectly well. She also convincingly conveys Megans strength and determination.
THE CROWLEYS ON SET
The Crowley family flew to Portland during production for a set visit. It was very important to all of us making this film that the Crowleys be a part of this experience, says Sher.
Vaughan recalls that he had early apprehension in meeting the films subjects: I was slightly wary because were telling an inspired by story; our film is not a documentary. But the Crowleys were very good about understanding all of that. They are a remarkable family, and remarkable people to spend time with.
Their presence on set also allowed Vaughan to witness the familys dynamic first hand and infuse the film with that energy. Theres lots of banter within the family and I think theres a danger if I hadnt met them, and got to know them on some level, that I might have been too precious and delicate in my approach to the material. So knowing them made my approach to the film very robust. The film has passion and lots of drama, and that comes directly from the Crowley family.
THE PRODUCTION LANDS IN THE PACIFIC NORTHWEST
It was December 2008 when Tom Vaughan arrived in Portland to sub-freezing temperatures and a record breaking 18.9 inches of snow, one of the worst snowstorms in Portlands history. He was meeting executive producer Nan Morales for a 2-day scout. Nan had recently shot in Oregon and thought the Pacific Northwest could work out perfectly for Extraordinary Measures. And, since the film was inspired by the Crowleys story, the filmmakers had the freedom to place the film geographically to their liking (the Crowleys actually hail from New Jersey). Tom and the producers saw the areas potential almost instantly.
I think it was the scope, says Morales. There are so many layers to Portland suburbia to high rises. You can stand in a building and see the city, and then beyond that youll see a river, and beyond that youll see Mt. Hood. Oregon has many different looks: beaches, mountains, and desert areas.
A geographic location with varying looks was required as the story takes place across a number of states. In the film, the family lives in Portland, but John travels to Nebraska and Chicago, and the family eventually ends up in Seattle.
Vaughan and Production Designer Derek Hill needed to differentiate between the locations for geographic accuracy but also to reflect the different stages of John Crowleys journey.
Part of the challenge visually was to demarcate the different stages and to take an approach that would help tell the story with clarity, explains Vaughan. We worked very hard, for example, to show the physical differences between John Crowleys home in Portland and Stonehills world in Nebraska. John walks out on his good job in the downtown Portland area, and the next thing you know hes driving up a deserted road in the middle of Nebraska and arriving at Stonehills house. Hes just thrown his whole life off track and bet it on this guy. Portland is a warm domestic place at the start of the movie and the colors and design had to reflect that. And then Nebraska is a very alien place for Johns character. The scenes in Nebraska emphasize the states flatness and that theres a lot of space and far less people so you get a sense of Johns alienation.
Set Decorator Denise Pizzini, who collaborated closely with Hill to carry out Toms vision, recalls how dressing the different Crowley homes required visually showing their changing economic status but also their consistent commitment to remain a grounded family. We show them upgrade a little but we maintain the same warm family feel to each space. We didnt want it to feel like overnight they got all this money and they went out and bought a bunch of fabulous stuff. So we used a lot of the same furniture to dress these various sets. And there were always toys all over the place.
When John and Aileen Crowley visited the sets, they were in awe of the similarity of the houses and neighborhoods chosen for filming to the places they actually lived in during their journey. From a Wilshire Park Craftsman-style home, to an exquisite home with a breathtaking valley view in Lake Oswego, to a contemporary beach house on the gorgeous, sprawling and rugged Oregon coast in Manzanita Beach. They felt the film was right on the money.
Oregon and the surrounding Pacific Northwest offered many locations that were a perfect fit. One of the biggest draws of the area was the 177-acre Nike World Campus in Beaverton. It served as Zymagen Pharmaceutical, theoretically located in Seattle. The Nike campus proved to be a perfect choice and had never before been shot. The production team worked hard to transform Nikes unique campus into an alternative reality that was cold and sterile. Pizzini reveals the reasoning behind this, It was important for the space to look impersonal and formal to make John and Dr. Stonehill feel uncomfortable and out of place. The offices and labs were made to look very monochromatic with cold, hard surfaces to the point where we even painted anything bronze to look more silver-gray. Anything to take the softness away. And we also tied in the exterior of Nike which is very angular and geometric.
The brand new Columbian office building in Vancouver, WA was dressed and shot as the interior of the Zymagen offices. In addition to serving as a key interior location, the Columbian proved a significant resource for Pizzini. She recalls, When you are representing big offices, you need multiples of many things, especially furniture. We ended up renting the furniture, including cubicles, from the Columbian to use in another location. It was a great help.
In addition to office furniture, the production required a large amount of lab and medical equipment. Pizzini shipped this equipment in from manufacturers and vendors from all over the country. Everything had to be as authentic as possible. Judging by the response from actual researchers and doctors present on set, it appears the production succeeded in hitting that mark. Dr. Hung Do and others just couldnt believe it. They said We can actually start doing experiments here! notes Pizzini.
Another key location was the Oregon Health and Science University, which is a center for Pompe treatment. Not only were OHSU doctors consultants on the film, but patients and their families were also consulted and asked to be part of scenes shooting in the hospital. Pivotal scenes were shot in OHSUs corridors and on the Skyway that connects OHSU with the VA Hospital. During filming, the hospitals remained fully operational. OHSU even provided a perfect spot for a visit by Governor Ted Kulongoski. He welcomed the Extraordinary Measures production to Oregon and held a press conference for local media.
A FAMILY CHANGED FOREVER
It was winter of 1998 and John and Aileen Crowley were growing concerned that their baby daughter Megan wasnt crawling. At the recommendation of their pediatrician, they took her to a neurologist. Within a month of that appointment, the Crowleys life changed forever. At fifteen months old, John and Aileens daughter Megan was diagnosed with Pompe Disease, a very rare genetic disorder which causes a deficiency in the enzyme that breaks down glycogen. The build up of glycogen causes muscle weakness throughout the body, affecting the skeletal muscles, diaphragm, nervous system, liver, and heart. Pompe Disease is a cousin disease of muscular dystrophies and a number of other neuromuscular diseases such as Lou Gehrigs Disease. The [Doctors] told us it was a serious disease, recalls John. They told us it was a fatal disease.
For John and his wife Aileen, it seemed like nothing could get worse. Then they received the call a few months later, after Megans diagnosis, informing them that their newborn son, Patrick, had also been afflicted with the deadly disease. John relates, Within a couple of months, we learned we had two kids who probably wouldnt live to be two it was heartbreaking (they would later learn that the life expectancy for the hybrid infantile/juvenile genetic form of Pompe that Megan and Patrick have is up to 9 years).
The family was told there was little that could be done. There was no cure and the pace of scientific research on Pompe Disease had been slow, too slow for the Crowley family. Pompe was an orphan disease which means, since its rare, pharmaceutical and biotech companies dont have as much financial incentive to devote resources to finding a drug to cure it. The Crowleys started to research Pompe but felt constantly out of the loop while navigating the medical landscape, and they were running out of time.
And Megan and Patrick were progressively getting sicker. Day-to-day life was a struggle, living with Pompe. As their muscles weakened, swallowing, chewing and breathing grew more and more difficult and they were soon put on ventilators. They also couldnt walk .
A turning point came to John during one of Megans hospital stays. Megan was profoundly sick; her heart had stopped three times in six weeks. John had almost given up hope. The defining moment came when Megans eyes locked on John and Aileen. John recalls that, though she could not speak or smile, her little eyes spoke for her -They told us she didnt want to quit. She wanted to fight. And from that moment on, we would too.
John and Aileen started their own business to develop treatment against Pompe. Though John had limited experience in the medical world, he allied himself with numerous scientists and doctors. Now John was faced with an incredible trade-off. His race to develop treatment to save his children required an enormous amount of time time he could no longer devote to his stable, secure, well paying corporate job (which provided his family with vital health insurance) and precious time he could otherwise spend with his children. His new mission would also mean a lot of traveling, which would put a strain on his marriage. But John put all that aside and leaped. I think I did my job, as a dad. I did what I had to do, says John.
Times did get tough for the Crowley family. John received a vote of confidence from his strongest ally -Aileen. I had a lot of confidence in John, she remembers. I knew he had done the research and homework, we just needed to give him our full support.
Eventually, Johns business developed a drug that showed promising, positive results. John quickly pushed for Megan and Patrick to begin the treatment in clinical trials. However, hospital review boards were not ethically comfortable with John being both a parent to the patients and executive of the company developing the drug. John made the decision easy for the boards. He resigned from his own company.
With this, the clinical study initiated and Megan and Patrick started receiving the life saving treatment. John was even able to push the button himself to begin the infusion on Megan, while Aileen pushed the button to start Patricks.
John recalls that he hadnt seen his children smile in two years, an affect of Pompes Disease. After the first couple of months [of treatment], we started to notice Megan was smiling again. So this was the first sign to me that there was some hope. At the childrens twelve week review, the Crowleys continued to see extraordinary results. John remembers looking at his daughter and telling her, This means your heart is getting better. Youre going to live to be an old lady. It was a moment filled with joy and exhaustion. And then she looked at me kinda gave me a thumbs up-then threw her arms around me, laments John.
People always say, How can you do it? and I respond How can you not? comments Aileen. I think most people in this position would do anything they possibly could for their kids.
The number of people with Pompe Disease worldwide is estimated to be somewhere between 5,000 and 10,000*. In 2006, the FDA approved the enzyme replacement therapy treatment that John Crowley worked so tirelessly to see to clinical trial. Patients who are given this treatment at birth can see their lives prolonged and their quality of life significantly improved. Today, John Crowley is head of a new biopharmaceutical company called Amicus Therapeutics which is developing drugs for multiple rare genetic diseases.
As of Fall 2009, Megan is twelve years old and Patrick is eleven. They continue to fight the battle against Pompe Disease one day at a time.
* results according to wwww.unitedpompe.com
ABOUT THE CAST
Brendan Fraser (John Crowley)
Over the past two decades, B
