MERIDIAN -- A new movie came out Friday, called "Extraordinary Measures." It's based on a true story, of a child living with a rare disease that no one knows much about. But an Idaho family does, because four of their children have a similar disease.
It's called Glycogen Storage Disease. In the movie, the girl has type two. The four Whitaker boys have type one, and if their parents miss a feeding - just once - all of their kids could wind up dead.
Every four hours - with no deviation - Ben and Jillian Whitaker give their four boys a large amount of cornstarch.
They do that because each of them has what's called Glycogen Storage Disease Type 1. It's a rare disease centered in the liver where it becomes difficult to maintain normal blood sugar levels between meals without constant feedings.
The cornstarch is complex and therefore takes several hours for their young bodies to break down. But for the first three and a half years of their oldest son's life they had no idea what was wrong.
"We wanted to know what was wrong. I kept asking if he had a parasite, because of the enlarged belly," said the father, Ben Whitaker.
At nine months old Mark's belly began to bloat and his arms became skinny. Doctors thought the bulging belly was nothing more than malnutrition.
"I think we were just as much under scrutiny as Mark as far as what we were feeding him and how were were taking care of him," said Whitaker.
This began a three year battle fighting misdiagnosis after misdiagnosis. Each diagnosis forecasting a young death.
"At first we really thought that he was just going to die. There's nothing you can do about it. There's no way to cure it. He's going to be dead in a few years," said the mother, Jillian Whitaker.
Then another doctor looked at the oldest boys Mark and Ethan. It was then that the discovery was made. Whatever was wrong with Mark - Ethan had it too. The disease was hereditary.
"The good part about learning that it's this life threatening disease is that there's something we can do about it. It takes a lot of work, and a lot of effort, especially on our doctor's part to get them all of their right treatments, and it's just a constant non-stop, every dall all day long," said Jillian.
And all night long.
"It's pretty light sleep. It's not really sleep. You lay there. You pretend that you're sleeping," said Jillian.
At 10:00 p.m. - 2:00 a.m. and then again at 6:00 a.m.
"If you sleep through an alarm at two o'clock in the morning you could wake up to four dead children. It's a little pressure," said Jillian.
So far Ben and Jillian are making the feedings.
"They're normal, they're happy, they're active, they're running around like crazy kids," said Jillian.
Their youngest two boys, Dallin and Jonathan - were diagnosed much younger.
To give you an idea how rare this disease is - about four to five hundred American's have GSD Type one. Seven of them are here in Idaho - four of those are the Whitaker's.
Ben and Jillian do not have the disease, but are carriers - something they didn't find out until about five years ago. The chances of all four of their kids having the disease is in the range of one in a million.
The Whitakers say their doctor and researcher in Florida has cured the disease in rats and dogs. They're hoping that by their oldest son's 18th birthday - 10 years from now - their doctor will have a cure for their boys.
For more information on the Whitaker family, and on their rare disease Glycogen Storage Disease, check out our Hotlinks.
