This movie always claimed that it was based on a true story, but despite that, for some crazy reason, I thought that the disease the children were suffering from called Pompe disease was a made up fictional disease. I never heard of it, and it just sounds fake..."Pompe." Turns out, the disease is real, and much of the story is in line with what really happened.
Pompe disease is a very rare genetic disease that is a kind of muscular dystrophy. Most kids don't make it past two years old, and rarely does anyone live past 9 years old. The parents in this film have two children with this disease. They know that they will die. Because the disease is so rare, there is not treatment for it and doctors can do little to help.
The daughter almost dies in the hospital in one scene, but she pulls through. The father sees the determination in her eyes, and he keeps thinking of her eyes while in a business meeting. He gets up and walks out of the meeting and flies all the way to the Nebraska to talk to a doctor that researches this disease for the U of Nebraska without telling anyone in advance. His wife is furious that he will lose his job for just walking out like that.
He quits his job, goes into business with he doctor to start a genetics company to find a cure to the disease, raises millions of dollars and risks it all for the slight chance of finding a treatment to the disease before his children's time is up. It was amazing to see such will and determination to put everything on the line.
He said it's crazy to quit my job, and to spend so much money, and to work so hard for something that could not even work, but I can't just watch my kids die. His wife in the movie said, I thought you were crazy at first, but when we started doing fund raising, and working to save our children, I realized it was better to do something rather than just accept what the doctors say and have no hope.
No comments:
Post a Comment