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Sanfilippo Syndrome

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Five-year-old Jonah Weishaar is like so many boys his age: loves Angry Birds, jumping on the couch and being silly for the camera.

But unlike most five-year-old's - he's living with Sanfilippo Syndrome.

"The kids are all incredible but they need our help."

Jonny Lee Miller - currently playing the lead role of Sherlock Holmes on "Elementary" has become a bit of an expert on Sanfilippo.

Simply put - it's caused by a defect in a single cell, eventually breaking down to the central nervous system. Language and motor skills are lost. Most don't survive past early teen years.

"The families are told to go home and make their children comfortable and enjoy their time with them," says Miller.

Miller believes more can be done. The main obstacle: Financing to fund research and clinical trials.

"The answers and the cures are right around the corner. There's just not enough money going into this right now and we're talking about little kids." 

"It just seems so ridiculous that money is standing in the way and could save my child's life," says mother Jill Weishaar.

Jonah's mom is paving that road to a cure. She created Jonah's Just Begun raising money to fund independent research. She's never allowed herself to imagine a future for Jonah until now.

"Going on four years now and I've started going - okay, Jonah's going to live. He's going to live. I know that."

Miller believes that too.

His next starring role is Thursday when he addresses a Congressional caucus in Washington on behalf of rare disease organizations.

It's something he's never done - but will use his celebrity if it means Congress will pay attention.

"It's an honor really. it's an honor to be asked. And it's also bizarre because you know...you're just on the TV."

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