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January 22, 2010

Former Walnut Creek dad's fight to cure his kids of devastating illness the subject of new movie


John Crowley, son of a New Jersey cop and a waitress, was a law school graduate and a Harvard MBA, building what he calls the “perfect Irish Catholic family” in Walnut Creek. 


“We were on top of the world,” Crowley writes in the University of Notre Dame Law School magazine.  “It was 1997. I had a great job with a consulting firm in San Francisco. Most importantly, we had two beautiful children. John was two, and Megan was one. By March of the following year, we were expecting our third child. Three kids aged three and under—the perfect Irish Catholic family was in the making!”



But in the months before their third child Patrick was born, he and his wife began to notice that Megan wasn’t as strong as a one-year-old child should be. “She wasn’t pulling up in her crib, and she wasn’t taking her first steps.”



A few days after Patrick was born in March 1998, they learned that 15-month-old Megan had a rare  muscle-wasting condition, Pompe disease. While learning that their older son, John, was healthy, they also found it that it was possible that Patrick also had it.  Their newborn’s diagnosis was confirmed a few months later.



The doctors told John and Aileen that the best they could hope for was that Patrick and Megan could survive for a few years breathing through ventilators with round-the-clock care. They might not live to two, and making it to 10 would be a miracle.



Despite their medical bills, the determined and entrepreneurial father decided to quit his job and start a biotech firm, which would focus on finding a treatment and even  a cure for this disease.




Cowley’s struggle is dramatized in the new film opening today, Extraordinary Measures. It stars Brendan Fraser as Crowley and Harrison Ford as the pioneering but cantankerous researcher who helps Cowley search for a cure.

  
That struggle is now dramatized in Extraordinary Measures, starring Harrison Ford as a pioneering, if anti-social, researcher, and Brendan Fraser as Crowley.



The family now lives in New Jersey, having moved there to be closer to doctors with more expertise in the disease. Crowley is president and CEO of Amicus Therapeutics, Inc. He tells reporters that he never expected that his family’s story would be turned into a movie.  Keri Russell plays Aileen. “Not once, during all our visits to the hospital or meetings with financiers, scientists and drug companies, did we imagine that a movie would be made about our lives.”


7 comments:

Anonymous said...

SM,

There was a positive review on KCSB readio today but no mention of the connection to th eWalnut Creek family that I heard.

Thanks for the article.

AKA Soccer Mom said...

Hi,
It sounds like soon after his kids were diagnosed, they moved back to New Jersey to be closer to the doctors that had the expertise. And that's where he started his company.

Anonymous said...

Thanks SM.

Sounds like we should go to this film about our local heroes. Actually, it souds fascinating. And I heard that Harrison Ford plays as though he were himself in this.

Anon 5:36pm

Anonymous said...

Maybe I'd call this "A man who once lived in WC," or something rather than a Walnut Creek man.
Irregardless, I've heard it's a decent movie and that Ford is quite good.

Anonymous said...

must be nice to be rich enough to start your own biotech firm when a loved one gets sick.

and then there are those of us who can't afford health care....

Anonymous said...

Let's hope for good news for this family and other sufferers of this disease. They sound like a brave bunch dealing with a rough hand they've been dealt.

At the same time -- and at the risk of getting a lot of blowback or having my comment here banned -- I must say I don't get the whole emphasis on "perfect Irish Catholic family" and how having three kids all under the age of three years of age can be good for ANY family, no matter if they're Catholic, Protestant, Irish, German, healthy or otherwise.

Anonymous said...

From a Pompe site, I see that this terrible disease is a very rare one but an inherited one. A good reason to NOT have children back to back!

http://www.ninds.nih.gov/disorders/pompe/pompe.htm