By Jessica Dean
PHILADELPHIA (CBS) — You saw him tonight right here on CBS 3, starring in the CBS series “Elementary.”
Earlier today, Sherlock Holmes himself, Jonny Lee Miller, stepped in front of lawmakers calling on them to help fund the fight and find a cure for a rare genetic disorder affecting children.
One local family is cheering him on from their Delaware home.
“Come on in guys, come on in Bray.”
As brothers, nine-year-old Ryan and six-year-old Brayden both love to jump on their trampoline, watch cartoons and read books.
They also both suffer from Sanfilippo Syndrome, a rare and fatal genetic disorder.
“In the beginning it’s devastating, you’re not quite sure what’s going on,” their father Carl Kapes said.
But now their father has a positive attitude and a clear mission — find a cure to make sure no other family must endure what his has.
Sanfilippo is essentially a defect in a single cell eventually breaking down the central nervous system.
Language and motor skills are lost and most children don’t survive past their early teen years.
“The family’s are told to go home and make their children comfortable and enjoy their time with them,” “Elementary” star Jonny Lee Miller said.
Miller has become quite familiar with Sanfilippo, learning about it through his cameraman whose son suffers from the syndrome.
On Thursday, Miller testified before a congressional caucus, asking them to fund research to find a cure.
“Even though i am British, I cannot vote here, I am a parent of an American child. I still hope to be able to help support legislative initiatives that spur the development of treatments,” Miller said.
Back in Delaware, Carl Kapes calls the quest for funding a race against time.
“Money is really what we need now to move this forward because the treatment is there, the research is done,” he said.
Until the cure is found, Kapes will continue to love his boys one day at a time.
“The things that a normal parent gets upset about, you don’t worry about that, you’re just happy that you have your children,” he said.
Precious moments indeed.
Carl Kapes and other families raise money and awareness through the Team Sanfilippo Foundation.
They will host their annual golf tournament on May 15.
For more information, visit: www.teamsanfilippo.org