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Boy with Rare Disease Hoping for Cure

Boy with Rare Disease Hoping for Cure

Posted - Nov. 16, 2004 at 9:25 p.m.



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Ed Yeates Reporting A three-year old Idaho boy arrived in Salt Lake City tonight, hoping doctors here can cure him of a very strange and very scary disease. He is only one of 200 people in the world with a condition that, in ancient folklore, was attributed to a curse.

Boy with Rare Disease Hoping for Cure

Nighttime is the only time when Nicholas Ashby feels safe. In fact, during treatment here at Primary, the windows in his room will have to blacked out during the day.

On a mountain top in the small town of Orofino, Idaho, Mary Ann Mattson takes her three-year old son Nicholas from a car with darkened windows. Inside the house she opens curtains and blinds which have been closed all day.

Mary Ann Mattson: “We come out at dark. When the sun goes down, Nicholas goes by the door and says, go outside, go outside, go outside."

Nick is one of only 200 in the world, only eight in the United States, with a rare blood disease called Porphyria. He has one of the most severe strains.

Mary Ann Mattson, Nick's Mother: “We don’t go fishing. We don’t go camping. We don’t go anywhere. We just stay home.”

Why? Any sun on Nick's skin burns immediately. Water blisters form and burst. Damage can actually eat downward deep into the skin. He's also extremely anemic and vulnerable to infections.

Boy with Rare Disease Hoping for Cure

Mary Ann: “I couldn’t believe it, that it had happened. I was dumbfounded. I am still dumbfounded and I still pinch myself and wonder why this is happening."

As children with Porphyria get older, hair begins growing all over the body as a defense against the sun. It's already started on Nick.

Mary Ann: “He’ll cover in hair, from head to toe. He’s already got it on his jaws and down his back.”

Though his baby teeth are white now, his adult teeth will come in black.

In less enlightened times, people with this unfortunate disease were condemned as werewolves. But in reality, Nick is nothing more than a cute three-year old who only wants to be normal, to play with his friends in the sun.

Mary Ann: “You wrap him in a blanket and you run. And he knows that’s not right and he wants to play with other kids, but he can’t. Go by McDonald’s, he can’t go in. We have to drive through. It’s not the way for a little boy to be raised.”

And it won't be if doctors at the University of Utah and Primary Children's have their way. A bone marrow transplant just might turn his life around, making him as normal as his older brother Mitch.

Doug Mattson, Nick's Stepfather: “That will be the miracle we are praying for. It will.”

When the sun goes down and darkness falls in Orofino, he can come out here with his family, because he knows that in the darkness, nothing will hurt him.

But IF the transplant works, except for deep scars left behind on the skin...

Mary Ann: “They’re saying he will catch right back up and be a normal healthy little boy.”

Nick will suddenly become a special little guy in medical journals. For Mary Ann, he already is!

Doctors will slowly kill off all of Nick's old bone marrow cells with chemo drugs. Then they'll transplant the new donor cells through an IV. It will take several months to find out if the infusion works.

Donations to help with Nick's expenses can be made at the Orofino Credit Union in Orofino Idaho.
Orofino Community Credit Union
234 Johnson Ave
Orofino, ID 83544
(208) 476-5112

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