NEW YORK (CBSNewYork) — As Sherlock Holmes on the CBS series “Elementary,” Jonny Lee Miller solves a case by the end of each episode.
But that’s not real life.
As CBS 2’s Kristine Johnson reported, since learning that a crew member’s son was diagnosed with the rare fatal disease Sanfilippo Syndrome, Holmes has become an advocate to find a treatment and a cure.
The boy who triggered Miller’s mission is 5-year-old Jonah Weishaar, who is like so many boys his age — he loves “Angry Birds,” jumping on the couch and being silly.
But unlike most 5-year-olds, he’s living with Sanfilippo Syndrome, which currently has no sure.
Miller, meanwhile, has become a bit of an expert on the disease, which is caused by a defect in a single cell that eventually leads to progressive degeneration of the central nervous system. Most of those who suffer from it don’t survive past their early teen years.
Sanfilippo often goes undected for years. Most children who have it are born with no visible signs, and it’s not until their preschool years that they start to show delays in motor skills.
“The families are told to go home and make their children comfortable and enjoy their time with them,” Miller told Johnson.
Miller believes more can be done. The main obstacle, however, is financing to fund research and clinical trials.
“The answers and the cures are right around the corner,” he said. “There’s just not enough money going into this right now, and we’re talking about little kids.”
Jonah’s mom, Jill Wood, is doing her part to pave the road to a cure. She has created the foundation Jonah’s Just Begun, raising money to fund independent research for the disease.
“It just seems so ridiculous that money is standing in the way and could save my child’s life,” she said.
Wood has never allowed herself to imagine a future for Jonah until now.
“Going on four years now and I’ve started going, ‘OK, Jonah’s going to live, He’s going to live. I know that,'” Wood said.
Miller believes that, too. And his next starring role will come Thursday, when addresses a congressional caucus in Washington on behalf of rare disease organizations.
It’s something he has never done before, but he is willing to use his celebrity if it means Congress will pay attention.
“It’s an honor to be asked, and it’s also bizarre because, you know, you’re just on the TV,” Miller said.
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