Little D's Bucket List reminds family, others of how precious li - New York News

Little D's Bucket List reminds family, others of how precious life is

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CUMBERLAND, Md. -

The story you are about to read is heartbreaking. But it is also a story of great hope. It's about people, even strangers, helping others when they need it most. And it all centers around a beautiful little boy.

The rush of steam, the lights, the instruments. Kids love trains. Eventually most outgrow it. But little Daniel Sullivan might not get that chance.

Daniel used to be able to stand up, but it is something that is no longer possible for him.

“It's metachromatic leukodystrophy,” said his mother Susan.

This joyful little boy has a disease that attacks the coating that protects his nerves.

“You kind of don't want it to be true, but you know it is,” Daniel’s father, Dan, told us.

“This is the part where he deteriorates rapidly,” said Susan. “The disease progresses slowly at first. Even in May, he was able to walk with a walker and now he can’t sit up.”

“You think you got maybe six months, eight months of listening to him talk, and then it's gone in a week and a half,” Dan said.

Daniel is days from his third birthday. His parents now have to push him in a stroller.

Most children with the disease do not survive past childhood.

“I'm an aunt so I am always thinking in advance of things that I want to do with him,” said Kendra Sullivan. “So the moment we received his diagnosis, I just quickly compiled all those things that I had dreamed of doing with him and Danny and Sue, and the rest of the family quickly added to that list.”

They called it Little D's Bucket List. And riding a train was on that list.

“I'm glad you could join us today for our journey from the queen city of Cumberland to the mountain city of Frostburg, Maryland,” the announcement rang out on the train.

On this day, Daniel is riding the western Maryland railroad.

While lots of people are taking pictures, none will be cherished like these photos are.

Soon, Little D's bucket list started making the rounds on Facebook.

“My family, we were raised not to ask for anything and certainly not to ask for money,” said Kendra.

They didn't ask. People offered -- money and bucket list items.

“Since we can't treat the disease, what we decided was just focus on making the time that he has as fun as possible,” said Susan.

In just two months, Daniel has been flown in a helicopter, licked by a reptile and lifted in a fire department bucket truck.

Make-A-Wish sent him to Innovation First International, a Texas company that makes Hexbug toy robots.

“He laughed for like an hour straight,” said his father.

“He seems to have figured out what we all work a lifetime to just within two years,” said Kendra. “He makes the most of his abilities every day. No matter the challenges that he faces, he always smiles and laughs and I find his joy to be infectious.”

Little D’s aunt also recalled this moment.

“We've had children -- a 6-year-old -- offer his Snoopy snow cone maker that he got for Christmas to Little D, which obviously we would never accept, but that gesture alone is something I'll forever treasure.”

Kendra also told us: “I just really want to stress the gift that we've received from the community because it’s truly transformed this experience for us. It's been something that I think that has been the darkest of times, but everyone has shined so much light on the experience for us that we have so many sweet memories that I'll treasure for a lifetime.”

They took a trip to Disney right away knowing eventually Daniel will lose his sight.

His father said, “it’s almost like a basketball clock counting down. You kind of want to squeeze in as much as you can in that limited time that you have because you don't know when that clock is going to stop, but you know it's coming quickly.”

“He definitely doesn't let you mope,” Susan said. “If you spend the day at home, he's like 'out, out, out, out.’"

Daniel's dad was injured in Afghanistan. He needed surgery back home and then returned to his job as a Frederick City police officer.

“I literally went back to work for three weeks and then this came out and they were like 'go do what you need to do,’” said Dan.

And these are clearly things he needs to do -- things like watching that giant steam engine spin on the turntable and then take Daniel for a spin too.

The smile says more than any words could. It is clear that Daniel has a lot more miles on his journey.

Back at the train station in Cumberland, Daniel throws a coin into a fountain to make a wish.

“I really believe Daniel is a gift,” said Kendra. “I think he's a reminder how precious life is.”

And he is a reminder that this family is not alone.

“I think I've learned from this that no matter how bad things are, there's an equal amount of good in it,” Daniel’s father told us.

Online:

Little D's Bucket List Facebook Page

http://www.gofundme.com/98y420

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