Four-year-old Cole Rapini has been in and out of hospitals ever since he was born.
On their website, Colescause.com, his parents, Hanna and Chris Rapini, explain:
Cole has gone through EEGs, VEEGs, MRIs, PET scans, EKGs, Ultra sounds, biopsies and countless blood tests. None of which have given us a diagnosis. Everywhere we go we are told "We have never seen another case like him. We don't know what is wrong with him. We don't know if he will ever crawl, walk or talk. He will write his own story."
Though they've battled for Cole's health since 2008, the couple from Springfield, Vermont, learned recently that their son "has lost brain volume" -- "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," they say on the website.
Faced with the knowledge of Cole's worsening health, Chris and Hanna were inspired by the Laura and Mike Canahuati to create a list of special things they want to do with their son. The Canahuatis made Avery's Bucket List, a blog written in the voice of their daughter, 5-month-old Avery Canahuati, who was dying of spinal muscular atrophy (SMA). Now, the Rapinis hope their similar efforts to raise awareness might put them in touch with someone who recognizes Cole's condition.
The Rapinis' more-than-80-item agenda ranges from completed tasks -- like "eat a hot fudge sundae" and "build a fort out of pillows and blankets" -- to ongoing projects ("ride on a carousel") and as-yet-unrealized dreams ("go to Disney World"; "meet a President"; "ride an elephant"). You can read the entire list here.
"Right now, he's happy, and it's really not fair to him for us to be in a bad mood," Cole's father, Chris, told News Channel 5/WPTZ in a video interview.
Avery Canahuati died at the end of April, shortly after her website reached international prominence. But the "bucket list" concept has inspired several families who hope to raise awareness of rare children's diseases. Claire and Gary Penney of Southampton, England, have also composed a "bucket list" for their 2-year-old daughter, who suffers from Alexander disease.
The following video, featuring images of Cole, was put together in 2009. For more information about Cole and his family, click over to Cole's Cause.