Cole's Cause
            
Coles Bucket List
Cole's Bucket List is inspired by a Beautiful little Angel Named Avery.

For the last 4 years Cole has been battling an ...undiagnosed condition that has caused vision loss hearing loss seizures and among other things severe developmental delay. We have traveled all over the country to multiple hospitals and Cole has endured multiple surgeries sedations and tests without any answers.

As parents our worst nightmare came true this week. We were told that in the simplest of terms Cole has a degenerative disease that is getting worse. In other words he has lost brain volume...which has caused his hearing to worsen along with many other things.

We know that kids can do very well on very little grey matter but when you start losing function that is when red flags are raised.

We are told that it is not acute meaning we have more than days weeks or months but other than that we have no idea how much time we have left with our amazing son. Repeat MRIs will be done every 4-6 months to monitor Coles brain volume.

In the meantime we have decided that we have alot of fun things to do to make up for the lack there of in the last 4 years......so after a good friend told us about Averys Bucket list we were inspired to create one for Cole.

Below is the list....we will use this site to show you all of the fun memories that we are making for Cole. We will post pictures and videos of each completed item and tell the story of the event through Coles eyes!! We look forward to sharing this with you all!!

Below is our list!!! In no particular order!!




Items Cole has checked off!!!



Go to Disney World

Have a blue mohawk

Eat a hot fudge sundae

Meet a celebrity

Meet my baby cousin Gavin

Be on TV

Have a slumber party

Meet a Rock Star

Go to a concert

Tell stories around a fire

Ride in a helicopter simulator!

Have ice cream for breakfast

Wear a funny mustache

Make a fort out of blankets and pillows

Fly a kite

Go to a dance

Go to summer camp

Jump on a trampoline

Pet a cow

Get my face painted

Go to the friendly farm

Ride in a race car on a road course

Play on a sports team

Go to a Red Sox game and meet Wally

Play on a sports team

Buy a star and have it named after me

Bake cookies



Items in the Works!!
Go skiing

Go iceskateing

See the Blue Man Group

Go snowmobiling

Go to the Zoo

Ride an elephant

have Rob Dyrdek sign a pair of my shoes

go bowling

go to a laser light show

go down a water slide and a twirly slide

go to the circus

play dress up in Daddys clothes

go camping

play hide and seek

play duck duck goose

ride a bike

ride on a ferris wheel

have a water balloon fight

go bowling


ride in a convertible

visit all 50 states

Alabama
Alaska
Arizona
Arkansas

California
Colorado
Connecticut

Delaware

Florida

Georgia

Hawaii

Idaho
Illinios
Indiana
Iowa

Kansas
Kentucky

Louisiana

Maine
Maryland
Massachusetts
Michigan

Minnesota
Mississippi
Missouri
Montana

Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina

North Dakota

Ohio
Oklahom
Oregon

Pennsylvania

Rhode Island

South Carolina

South Dakota

Tennessee
Texas

Utah

Vermont
Virginia


West Virginia
Wisconsin
Wyoming

play at the beach


ride in a helicopter (for fun)



ride in a monster truck


make an adapted fishing pole and catch a big fish

shoot my b.b. gun

meet a President



sit in Santas sleigh

visit the North Pole



hangout with Daddy all day and watch cartoons in my funderpants





roll down a grassy hill

swim in a warm ocean

have a picnic

stay up all night watching cartoons

lay on a blanket and look at the stars

ride in a dune buggy

go 4 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 ;)

go to story land

go on a date

eat a pbj sandwich

make a snowman

ride on a train

ride on a carousel

ride in a drag racing car





Items added by our friends!

Ride in a Fire Truck

Be the Grand Marshall of a parade!



Items you can help with:

get 100 members on my facebook page Cole's Bucket list

get 1,000 members

get 10,000 members

get 50,000 members

get 100,000 members

See HR2671 CAL Undiagnosed Disease Research and Collaboration Network Act get passed. Click the link below to send a letter to your State Rep telling them you support it and want them to sign on as a Co sponsor!
http://www.opencongress.org/bill/112-h2671/show

We are open to any other ideas so feel free to email us with your suggestions!!! Also please share Coles group with your friends!


We will use this section of Coles website to post photos and videos of Cole crossing these items off the list.

First item crossed off the list was the hot fudge sundae. Our close family friend Melissa showed up after work on the day the list was posted with a hot fudge sunday for Cole!! He sure did enjoy it!!! Thanks Melissa!!



Play on a team

Cole joined Jasons Angels and now plays tee ball every sunday night!! Here are some pics from our first night!!!

Cole and Daddy playing the field and at bat!!





Be on TV......that goal has been accomplished a few times now. But it started with David Carns of WPTZ!!! Thanks so much David for all of your support it means so much to us!!! Heres a pic of David Jen and Cole at our first interview. Below are links to Coles stories!!!
http://www.youtube.com/watch?v=kOnqOFbZCRk



Build a fort out of pillows and blankets!!!! Mommy Cole Jen and Wyatt did this one! Everybody had a great time!! Cole even had a friend from school over for the first time the next day and they had a ball playing in the fort!!



Cole Mommy and Cousin Wyatt!


Cole, Wyatt and Jen!!!!



Buy a star and have it named after me....well the first night the list was posted 3 people bought me stars!! How lucky am I? Thank you all so much!! Will post more pics of us looking for our stars later!! Here is the bear that came with one of them!! Thank you Moira, Trista, Jamie and Kyle, Sharon, Duane and family as well as our anonymous star gifter!!!!

5/19/2012


Tell stories around a fire!! We all enjoyed a nice fire in the backyard at Justin and Melissas house!!! Cole fell asleep enjoying the fresh air and the warm fire!! Here he is with his Daddy and Kyle!
5/22/2012

Pet a cow!! A huge thank you to Putnams Farm for allowing us to come visit the cows and check off another list on our item! We had so much fun!!! Channel 3 joined the fun check out the link below!!






After all the cow and tv excitement we went home to rest and then it was off to Coles first dance!! He was invited to an 8th grade semi formal by a beautiful girl named Hannah!! He had so much fun dancing with all the girls!!! Thanks Hannah we love you!




5/25/2012

Ice cream for breakfast! A huge thank you to our local Friendlys staff for making our breakfast sundaes so special!!








After breakfast we went home and completed "Wear a funny mustache all day!!!!"  Cole thought that the mustaches were so funny!!!!!


5/29/12
BLUE MOHAWK!!! Thank you Maria Hammerschmidt for taking the time to come to our house and spend the morning with us giving Cole and Wyatt their mohawks!!! (dont worry Wyatts is only hair gel) Everyone LOVES Coles Mohawk!!

Wyatt Maria and Cole!!!!!



5/28/2012

We took a trip to Limerock Connecticut so that Cole could ride in a racecar!!! Although it was very hot Cole enjoyed not only his ride but laying on the blanket listening to the cars while the raced!! A huge thank you to the Bellows Family for making the day so special for all of us!! It means the world!!!






6/16/2012

Ride in a Fire Truck and be the Grand Marshall of a Parade.....2 items added by you guys!!

What a wonderful Day! I cannot say enough good things about all the guys on the Springfield Fire Department. They went above and beyond to make this day so special for Cole. They presented him with his own Fire Helmet and Badge (Which road on the front of the fire truck during the parade) We got to Fire Department early in the morning and were able to visit with the guys before it was time for the parade. At which time we were surprised when a member of the Alumni Association presented us with a certificate stating Cole was the Honorary Grand Marshall!!! It was so cool and completely unexpected!!! Then Cole and his Daddy hopped in the brand new ladder truck and rode with an awesome Firemen through the parade!!! It was such an awesome experience for our whole family as we watched with excitement when we saw the fire trucks coming. As a Mother I felt very proud and honored by all the love and support shown for my son!!!









7/2/2012 -7/5/2012

Go to Summer Camp

We were overly excited after receiving an invitation to attend to                                      . In Concord New Hampshire!! If you are anywhere near the Concord Area and have kids that play baseball I highly recommend looking into this camp for next summer!! Cole had a great time at camp!! He met so many awesome kids and the adults running the camp were amazing!!! This camp has so much to offer!! We would like to thank John Bly and the rest of the Volunteers for inviting us to Camp and providing us with some pretty amazing memories!!!  


7/11/2012

Meet My Baby Cousin Gavin!!!

Gavin Cole Bush was born on 7/10/2012 unfortunately we were still in the middle of the 18 plus hour drive. But Cole was there waiting with cousin Wyatt to meet Baby Gavin on his first day home from the hospital!!! <3


7/24/2012

Ride in a Helicopter...simulator!

We were so honored to be invited to the New River Air Station In Jacksonville, North Carolina. We met so many amazing men and women during our visit. There were surprises around every corner as everyone wanted to make sure that Cole had a great time. We cannot say enough about this experience. It was very humbling. These are True American Heroes and they came together for a little boy that they had never met before. Our thoughts and prayers are forever with our Troops and Their Families. Avery special Thank You to Sergeant Kemp.



8/1/2012

Visit The Friendly Farm!!!

Cole was very lucky to visit The Friendly Farm with his Mommy, Jen, Papa, Auntie Em, Cousin Wyatt, Auntie Abbey and Cousin Gavin!! The kids really enjoyed the animals and so did the adults! It brought back great memories of when we used to visit as kids! The Goats had no fear and at one point one jumped in Coles lap....he didn't seem to mind:)



8/24/2012

Go to a Red Sox Game and Meet Wally

We had an awesome time walking around Fenway with Cole and were so happy to be able to enjoy a game with us. We toured with Red Sox Ambassador Ann who was so sweet and made sure that we had an amazing time! Cole was able to go on the Field for batting practice!!! He got a few autographs!! Mark Melancon brought him a ball that he was warming up with!! We toured the whole park and had so much fun!! During the opening ceremonies we stood on the field on the 3rd baseline waiting for Wally!!! Wally was a lot of fun! He took pictures with us and autographed a Wally doll for Cole!! They had tons of surprises for us all throughout the game. It was an amazing experience!!! A huge thank you Michelle, Ann and everyone else that made this possible!!

8/25/2012

Meet Rock Stars & Go to a Concert!!

Another very exciting item on the list was meeting Rock Stars and go to a Concert. We got a 2 for 1 deal on this one! We were so excited to meet The Fray as they are one of our Favorite Bands!! We were fortunate enough to get the opportunity to attend their concert and have a meet and great. I  cannot tell you how amazing these guys were with Cole! They were not afraid to "man handle" him which is exactly what Cole loves and what we love to see as parents. They were so friendly and totally down to Earth!!! After our meet and great we were again fortunate enough to watch Carolina Liar, Kelly Clarkson and The Fray perform. We were right under the sound stuff (sorry not sure the technical term) so Kelly was a little loud for Cole. But everyone who performed was amazing. Cole loved the softer sound of The Fray!!! We are so thankful to Debbie, The Fray and their Manager Michael for giving us the opportunity to create such an awesome memory!!!











9/8/2012

Meet a Country Singer

The amazing thing about the bucket list is how many people want to help us check items off the list, especially people that have never met us. Such is the case with meeting Scotty McCreery! A few months ago I was contacted by a complete stranger who wanted to help and offered us tickets to see Scotty McCreery as well as a meet and great!! Despite tornado warnings and standing in the pouring rain we still managed to have a great time!!!  Scotty McCreery was very sweet! If you ever get the chance to go to his concert I highly suggest it. His voice is so amazing. I could have listened to him for hours!! Jenna Jentry opened for Scotty she was great too! Kevin DeClue her back up singer has an amazing voice and little did we know he was a local boy!! We chatted with him after the performance and he even went and got Jenna to have her come and meet Cole!! He knew nothing of who we were or why we were there. He was just genuinely a really nice guy. So Kevin if you happen to see this thank you so much for going out of your way to do something so special for us! I am still kicking myself for not getting a pic of you and Cole we were just so excited it slipped my mind....but we at least got the autograph:)


9/29/2012

Hangout in a Wrestling Ring, Get my Face Painted, Win a Wrestling Belt!!

Body Slam The Bucket List!! So much fun!! I cannot say enough about all of the Wrestlers that attended this event and I know I keep saying that but its because it is so true. These guys all came together after our family was the victim of a scam and some loser pretending to be a pro wrestler took money from us made money off from us and never returned anything to us. Once these real wrestlers found out what had happened they took it upon themselves to make it right for us, which they did not have to do. All these men and women donated their time to come together for Body Slam the Bucket List the First Annual Cole Rapini Cup! The event raised over $1200 which is absolutely amazing and will help us out so much. But what made it so special was the people. Everyone made sure to come over and meet Cole and introduce themselves to us and they were genuinely excited to do so!! You could tell that they were there because they really cared about him! Chuckles the clown offered Cole a special face painting! Which I have to admit this was one item on the list I was not sure how Cole would tolerate but he loved it and Chuckles was awesome and totally worked around Coles wiggles!!! In the middle of the last match we had been asked to get in the ring when it was down to 5 people to read the special rules. I was kind of nervous but we got in the ring when they called us. Frankie handed me the trophy and said that the winners had already been decided and asked me to read the trophy. I looked down and was speechless as tears filled my eyes. The Winners were Chris and Hanna Rapini!! That was totally unexpected but again goes to show just how much everyone really genuinely cares about our family and took the time to surprise us like that. Cole had a great time meeting everyone. He smiled and giggled. Its so nice to see him light up the way he does when he is at an event that he knows is special for him. His whole demeanor changes and on top of the happy boy he already is he gets this glimmer in his eye. Its a reminder that even with all the crazy medical stuff going on and no matter what the tests say Cole knows whats going on! By the end of the night when he was asked for high fives he was really reaching and trying to do it himself!! We made a ton of new friends that night! We cannot thank you guys enough for everything that you did for us! It means the world!! A huge thank you to my Coles Grammy, Auntie Em, Wyatt, Syd, Katie, Corey and Seth for sharing this experience with us!!



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