'Extraordinary Measures' covers unusual fight to save children from rare form of

[Guest guest]

Sounds like a goodie - a lot like Lorenzo's Oil - and all of us parents are

crazy - HA!

'Extraordinary Measures' covers unusual fight to save children from rare form of

muscular dystrophy

Wednesday, January 20, 2010

By Barbara Vancheri, Pittsburgh Post-Gazette

The dry facts of Crowley's life sound tragic.

He was just 7 years old when his policeman-father was killed on duty. By the

time he earned his MBA from Harvard Business School, he was 30 and saddled with

student loans in the six figures.

The New Jersey native and his wife, Aileen, had a healthy son and then two more

children, who were diagnosed with a rare and nearly always fatal form of

muscular dystrophy called Pompe (pronounced pom-pay) disease. They had never

heard of it, but it immediately shaped their lives and a movie opening Friday

called " Extraordinary Measures. "

Today, when Crowley talks about his two sons and daughter, it's an optimistic

mix of medical updates and average dad stuff, such as how his daughter just

wants to meet the Jonas brothers.

" is 15, is 13, will be 12 in March. They go to

Witherspoon Middle School in Princeton, " Crowley said by phone during a

publicity stop in Philadelphia.

" They're incredibly smart little kids -- Pompe never affects the mind. So the

medicine we invented and got to them in time stopped and reversed the

enlargement of their hearts, which was the most life-threatening aspect of the

disease, and that saved their lives. "

For a while, it strengthened ailing and , but that has waned.

" So they're still special kids. They're still in wheelchairs, on ventilators,

but they thrive and they're happy and they go to a public school and 's a

straight-A student. 's in sixth grade, in seventh, in eighth,

and they're incredibly happy. "

The movie echoes what the family has learned: the importance of spending time

together, of cherishing the joy in life and of innovation in medicine.

" We took a great step forward with this medicine but it's just that, it's just a

step forward, it's not the final answer, " Crowley says. " So we keep working and

a lot of people keep working on the next best answer. "

The Crowleys' story is told in " Extraordinary Measures, " starring n Fraser

and Keri as and Aileen Crowley. on Ford plays a

twice-divorced, brilliant but iconoclastic scientist.

The Crowleys and close relatives got a sneak peek a few weeks ago. " They laughed

and they cried a little bit and they cheered. I don't know if you can ask any

more in a movie. Our kids loved it. "

Pompe affects only a few thousand children worldwide, usually leaving them with

little to no muscle function, enlarged hearts, and severe difficulty breathing.

Crowley left his job with Bristol-Myers Squibb to launch a start-up biotech

company focused exclusively on developing a treatment. One of the movie's

messages is evident in the closing song, " Change the World " by Clapton.

" We didn't change the world, we just helped to change one very small part of it

that made a huge difference for us and for small numbers of people. ... If every

one person who sees that movie does one thing that can change one little part of

the world, you can make it a better place. "

The seed for the movie was planted by Geeta Anand, who wrote stories about the

Crowleys for The Wall Street Journal and, later, a book called " The Cure: How a

Father Raised $100 Million -- and Bucked the Medical Establishment -- in a Quest

to Save His Children. "

Ford read the articles, called two producers who had made the true-life stories

" Brockovich " and " World Trade Center, " and set the wheels into motion.

Months of discussions, phone calls, meetings and a crash course in Hollywood

ensued.

" Ultimately, it comes down to trust because you do sign your life rights away, "

Crowley said, although because the movie is inspired by Anand's book, dramatic

license was taken.

The family was relocated, for instance, from Princeton, N.J., to Portland Ore.,

characters were composited and timelines compressed. A scene about an attempt to

steal life-saving medicine is powerful but not exactly true.

" That, in a very dramatic way, captures what was a very intense and frustrating

time for us where you really are at your wits' end and you're up against the

wall. ... That and every other change in the movie from real life, they made

sure to stick to the tone, the image, the dynamics and certainly the spirit of

everything that happened, and they captured it beautifully. "

Today, the family has a Web site, www.crowleyfamily5.com, and a new book,

" Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy " (you

can read an excerpt online about a 2004 Thanksgiving trip to New York).

Crowley runs a biotech company exploring new technologies for Pompe and other

diseases, such as Parkinson's. And, at age 42, he has a cameo in " Extraordinary

Measures " to his credit.

" I had three lines, two got cut, one survived, so I got to keep the SAG card. I

played a venture capitalist. So for two days I sat in a conference room in

Portland, Ore., and yelled at on and n and told them how crazy they

were and their business plan was nuts and it'll never work and they told me

basically to go to hell.

" It was incredibly therapeutic to sit on the other side of the table

Read more: http://www.post-gazette.com/pg/10020/1029433-60.stm#ixzz0dBbwKY6o