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Parents write bucket list for 4-year-old

Cole Rapini, 4, giggles like every other young boy, but his medical condition has bewildered doctors.
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Cole Rapini, 4, giggles like every other young boy, but his medical condition has bewildered doctors.

“They’ve written papers on him, because they’ve never seen anything quite like it,” said Hanna Rapini, Cole’s mother.

It’s a medical condition that’s caused severe developmental delays.

In March 2008, Cole was born completely healthy, but after one-month, his condition started to worsen, Hanna said. A few months after he was born, he had excess tissue removed from his airway. Then, fluid built up in the layers of his retina, something his doctor had never seen before.

Cole is now left with hearing loss and little vision – he sees mostly shadows, his parents said.

His young life, full of hundreds hospital visits and eight surgeries. Now, doctors have told Cole’s parents he will live for only a couple more years -- as the grey matter of his brain begins to deteriorate.

“For the last four years that's what we've done and now we know that it's leading to this and we have a few years to make up for fun stuff,” Hanna said.

Fun -- on an 81 item bucket list.

“We just kind of focus on the good things,” said Chris Rapini, Cole’s father.

The list includes playing duck-duck-goose, meeting a celebrity, even lying on a blanket looking at the stars – events Cole’s parents said are memories their son will always remember.

“Right now he's happy,” Chris said. “It's really not fair to him for us to be in a bad mood.”

“We can't grieve for Cole yet, he's so much alive,” Hanna said. “He's such a happy kid. He's still here. We will deal with those emotions and those issues when they come, but right now, we just have to make the best of the time that we do have left with him.”

Both Hanna and Chris have been tested for genetic problems they may carry, but there’s no answer to their son’s illness. They hope their story helps other parents whose children are in the same situation – or who may have the same symptoms as Cole.

Cole's Bucket List:

Go to Disney World

Have a blue mo-hawk

Go skiing

Go ice skating

Ride an elephant

Have Rob Dyrdek sign a pair of my shoes

See the Blueman Group

Go to a laser light show

Go down a water slide and a twirly slide

Eat a hot fudge sundae

Go to the circus

Play dress up in Daddy's clothes

Go snowmobiling

Go to the zoo

Go camping

Play hide and seek

Play "Duck-Duck-Goose

"Meet a celebrity

Meet my baby cousin Gavin

Be on TV

Have a slumber party

Ride a bike

Ride on a Ferris wheel

Bake cookies

Have a water balloon fight

Go bowling

Go to a concert

Ride in a convertible

Visit all 50 states

Play at the beach

Tell stories around a fire

Ride in a helicopter (for fun)

Ride in a monster truck

Make an adapted fishing pole and catch a big fish

Shoot my BB gun

Meet a president

Have ice cream for breakfast

Sit in Santa's sleigh

Visit the North Pole

Wear a funny mustache all day

Hangout with Daddy all day and watch cartoons in my underpants

Meet a rock star

Fly a kite

Go to a dance

Roll down a grassy hill

Go to summer camp

Jump on a trampoline

Swim in a warm ocean

Have a picnic

Pet a cow

Stay up all night watching cartoons

Lay on a blanket and look at the stars

Ride in a dune buggy

Go four-wheeling

Play in a tree house

See Disney On Ice

Make Christmas ornaments

Ride in a hot air balloon

Illustrate a book

Do a turtle backpack turtle spin ;)

Get my face painted

Build a fort out of pillows and blankets

Go to the Friendly Farm

Go to Story Land

Go on a dateEat a PB & J sandwich

Buy a star and have it named after me x 3 :)

Make a snowman

Ride on a train

Ride on a carousel

Ride in a drag racing car

Race around a track in a race car

Play on a sports team

Go to a Red Sox game and meet Wally