A beautiful human interest story...with a happy ending

With so much bad news these days, I thought you might enjoy some "happy" news:

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The story of the Crowley family, whose two kids have Pompe disease, has been transformed into a Hollywood movie starring Harrison Ford, Brendan Fraser and Kerri Russell, the New York Daily News reported.

Megan and Patrick Crowley, from Princeton, N.J., suffer from the rare muscle-wasting disease. Their parents, John and Aileen, were told the kids wouldn't live past their ninth birthday.

Today, Megan is 13 and Patrick is 11. (Older brother John Jr. is unaffected by the disease).

When doctors told the Crowley's there was no cure and no hope, the family decided to take matters into their hands: John quit his job and founded a biotechnology business dedicated to developing a cure for Pompe disease.

“I was at home in New Jersey, holding day-to-day life together,” says Aileen, 41. “But I had a lot of confidence in my husband. If anyone could do it, he could.

“People always say: ‘How can you do it?’ and I respond: ‘How can you not?’ Most people in this position would do anything they possibly could for their kids.”

All the time, Megan and Patrick were getting sicker. They could barely swallow or chew. Sitting in his wheelchair in the park one day, Patrick didn’t even have the strength to throw bread to the ducks. A scene in “Extraordinary Measures” shows how the family characteristically handled the situation, with humor.

“There were plenty of times when the science was tough and the business was tough and I didn’t want to be away from the family,” recalls John.

“I thought there were smarter and better people than me who could do this. But I knew the importance of perseverance and determination.

“I have a tiny little plaque on my desk which my mom gave me the week I started that tiny company.”

The quote captures the spirit of Winston Churchill?a>??s indomitable will during World War II, saying, “Never, never, never quit.”

That Churchillian drive paid off. John’s business developed a drug that showed promising results. FDA rules, however, forced him to resign from the company before Megan and Patrick could take part in a clinical trial in 2003.

Astonishingly, the medicine worked. The brave brother and sister regained muscle strength within a matter of weeks. Their organs — grossly enlarged because of the increased strain — shrank to regular size. Megan was able to smile for the first time in years.

John recalls looking at Megan and telling her, “This means your heart is getting better. You’re going to live to be an old lady!”

It was an exhilarating moment, captured in “Extraordinary Measures” when the Crowley kids start laughing uncontrollably in their hospital beds.

In real life, Megan’s reaction was more low-key. “She looked at me — kinda gave me a thumbs-up — then threw her arms around me,” says John. Within six months, Patrick and Megan could sit up unassisted and enjoy hectic family outings to places like Disney World and the beach.

Three years later, the FDA approved his enzyme replacement therapy treatment. Now, patients who are given the drug at birth have dramatically improved muscle control and a much longer life expectancy.

As for the Crowleys, beyond Thursday’s glitzy New York premiere, they look forward to a rosy future.

“Megan plans to go to Stanford University and become either a teacher or a fashion designer,” says John. “Patrick wants to follow in his grandfather’s footsteps as a police officer.”

Those ambitions have a good chance of being realized. When you have parents like John and Aileen, big dreams can pay off.

“Extraordinary Measures” opens in theaters Friday. John Crowley?a>??s book, “Chasing Miracles” (Newmarket Press), is available Feb. 2.

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I've yet to see this Movie,but will! I'll wait till I can get it at home.So I can sit ,watch & most likely go thur a box of tissues!
I do know first hand what its like, to know a loved one will die, with no cure in sight! It took 3-years and a few months. If there was a chance I'd of hunted it down too! But has a child at the time all I could do was watch has a loved ones life slipped away painfully!
At least I know theres a Happy Outcome for these beautiful children!

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