Boy, 4, checks off 'Bucket List' while battling brain disease

Meet 4-year-old Cole Rapini of Springfield. He's petting a cow for the first time.
http://www.wcax.com/story/18628001/vt-boy-4-checks-off-bucket-list-while-battling-brain-disease

Vt boy, 4, checks off 'Bucket List' while battling brain disease Posted: May 25, 2012 5:55 PM EDT Updated: May 25, 2012 7:17 PM EDT By Deanna LeBlanc - WCAX CHARLESTOWN, N.H. - Meet 4-year-old Cole Rapini of Springfield. He's petting a cow for the first time. "You like the cows?" his mom asked as Cole laughed. Cole can't quite see the cow; he has only limited vision in one eye. And he can't talk to tell his mom how the cow feels, but Hanna Rapini says she knows. "If he's frustrated or if he's mad, just the different sounds and different actions that he does, he definitely lets you know what he wants," Hanna explained. Cole is suffering from a rare and degenerative brain disease that has doctors stumped. "Nobody knows," Hanna said. "At this point we've been all over the country to lots of different specialists. We did a week at the undiagnosed disease program at the National Institutes of Health, and as of right now, nobody has seen anyone exactly like Cole." Doctors have performed multiple operations to help Cole's vision, breathing and eating, but they don't know why his brain continues to deteriorate. And without a cause they say they don't know how to stop it from getting worse. He is dying. "This was our biggest fear-- that it would lead up to this," Hanna said. But Hanna and her husband, Chris, are trying to live in the present. They've created an 81-item "Bucket List" for Cole. It's filled with normal things most of us take for granted, but Cole's parents say it's moments the 4-year-old has missed because his free time is spent crisscrossing the country to visit specialists. "A lot of times when you have a sick child you are so focused on doctors' visits and getting calories into him and medications, you often don't stop to think, oh my child is 4 years old and he has never had a hot fudge sundae," Hanna said. As his parents cling to hope, they're also realistic about his future. "Hopefully there is a miracle for Cole and this doesn't happen," Hanna said. "But we also want to be able to give him as much as we can, thinking the doctors are right." For now, that means helping their son say hello to a Holstein. A family focusing on the present because their future is so uncertain. Cole's mom says the number one item on the bucket list is to have Congress pass HR.2671. It's a bill that would create a database for doctors treating patients with rare diseases. The hope would be that doctors could communicate and possibly collaborate on diagnoses and cures, but so far it hasn't made much progress in Washington. Cole's bucket list is online. Click here to see it.