Each Christmas Day brings a visit to the cemetery for Stephen and Sarah Benn.

It’s a way for them to spend time with their twins, Alexander Ethon and Natasha Elizabeth, who died after they were born prematurely 2½ years ago.

Through an arduous and ongoing effort, the Benns have managed to turn that tragic story into something good.

“On November 19, 2017, the twins’ 1st birthday, I set up a Facebook group and an e-mail list and we announced to the world that we were going to try to run 48.6 miles and raise some money for charities in Bermuda, Canada, the US and the UK,” said Mr Benn, who had never tackled a similar distance before.

“I wanted to do something meaningful that would take a real effort and also hoped that such a crazy adventure would get people’s attention and help with donations a bit. For the kind of money I wanted to raise, a 5K wasn’t really going to cut it.”

Big Disney fans, the Benns decided the Dopey Challenge would make an appropriate backdrop. The event, which is held every January at Walt Disney World in Florida, involves four consecutive runs — a 5K, 10K, half-marathon and full marathon.

An initial target of $2,222 was met within three hours; a second goal of $5,000 was passed within a week.

“Then I got an e-mail from Hiscox Bermuda, who put up a substantial donation ... and other donations kept rolling in as well,” said Mr Benn, an actuary who once worked for the company.

By the time race day rolled around there was a significant sum on the table. Mr Benn was thrilled to have a friend, Heather Kent, by his side at the starting line.

“[She] heard about my plan, said I was crazy and promptly signed up too. In the end we ended up raising over $21,000, survived the Dopey Challenge and had a bit of fun doing it.”

Twins Alexander and Natasha weighed just over 1lb each at birth.

“Sarah had been admitted to [King Edward VII Memorial Hospital] almost two weeks prior, and for nearly all of those days it seemed like the twins could arrive at any minute,” said Mr Benn, who lived here for 12 years until he and his wife moved to Florida in 2017.

“The hope was that they would be able to get to at least 23 weeks gestation and we could be transferred to another facility with an appropriate newborn intensive care unit because they were clearly going to be coming early.”

Target date met, the Benns left Bermuda on a medevac flight to Toronto for care at Mount Sinai Hospital. The twins came two days later.

“Unfortunately, despite the best efforts of many, many people, our twins were just too small and died the morning of November 24, 2016,” Mr Benn said.

He and his wife were fortunate that their employers, PwC Bermuda and Endurance Specialty — now Sompo International — allowed them extended time off to grieve.

“We can’t imagine what it would have been like just sort of returning to work the next week or whatever, which is, I’m sure, a situation a lot of people find themselves in,” the 38-year-old said.

They decided to raise money for Mount Sinai and Bermuda Hospitals Charitable Trust “as well as charities supporting families dealing with infant loss”.

“I just wanted to do some good, any good really — partly to thank everyone who tried so hard for us, partly as a tribute to Alexander and Natasha, partly because I just wanted to do something.”

He completed the races in 46min 52sec, 1hr 28min 25sec, 3:12:38 and 6:35:09, and then packed away his sneakers — mission accomplished.

“Between finishing Dopey on January 8, 2018 and the end of August 2018, I ran a sum total of 16.4 miles according to my Garmin. We got a new house and a dog, and I took up woodworking — I just had other stuff to do. Then something happened ... people started e-mailing me asking if I was doing the Dopey Challenge again. I had considered it a few times, but it’s not an easy thing to do and I didn’t really think it had much repeat value in terms of donations. Little did I know.”

Although “badly out of shape”, he signed up hoping to raise $5,000.

“I couldn’t even run a mile without stopping but thought if I could keep from getting hurt I might just be able to pull this off,” Mr Benn said. “Training started and I dropped about 20lbs over four months. Due to timing/logistics Heather couldn’t make it this time and I’d be doing this one solo.”

As in 2017, he launched fundraising on the twins’ birthday, November 19. Once again, Hiscox Bermuda gave a generous gift; donations soon neared the $21,000 mark.

The Special Care Baby Unit at King Edward VII Memorial Hospital received a cheque for $15,000 last month.

“The donors are the real stars of all this,” Mr Benn said. “I just trot around Walt Disney World at a wholly unremarkable pace. The support has been absolutely shocking.”

His plans for Dopey 2020 are already in place. Some people have expressed interest in raising cash under the “Run for the NICU” banner.

“Really, that’s the short-term goal — getting more people involved,” he said.

“There’s no need for it to be ‘dopey’ or anything like that, really anything will do. Dopey was just my way of grabbing attention. It doesn’t matter what event, it doesn’t matter what hospital, pick whatever works for you — all that matters is money going to NICUs to help babies and their families.

“Ultimately, someday I’d like to add a mental health component to all of this. We, and others we’ve come to know, have all found that support [for people whose children die] — if it exists — tends to be scattered and hard to find.

“The near-crippling periods have become less frequent and not as lengthy over the past two years but I’m sure they’ll never entirely go away. Most parents watch their kids open presents on Christmas morning; we go to the cemetery to visit ours — nothing’s ever really going to change that reality.

“That’s why I think it’s so important. People like us would greatly benefit from tools/resources pretty much for ever, not just the immediate aftermath.”

In Dopey 2018, he “re-aggravated a training injury” in the 10K race; from that point on his goal was to simply “get it done”.

This year, he made it around safely — finishing in 33:10, 1:12:11, 2:40:52 and 5:52:03 — but the battle reduced him to tears.

“Miles 24 and 25 were a struggle to maintain composure,” he said. “I knew I was going to finish and the enormity of what I’d done physically, twice, why I was doing it and the amount of support behind me all hit pretty hard.

“By that point I’d finally clued in that I was part of something more/bigger than I’d initially realised. However, I managed to not go full-on ‘ugly cry’ and held it together to finish all four runs below my goal times, and well below my 2018 times.

“Thus far, donations are over $42,000 between the two years. The plan is to actually keep running this year, drop another 20lbs, maybe edge closer to becoming ‘a runner’, and take about 1 hour and 20 minutes off of my 2019 time, which would bring me below nine hours cumulative — over three hours quicker than my debut in 2018.”

• Follow Stephen Benn’s fundraising efforts at runforthenicu.com and on Facebook, Dopey Challenge for Alexander and Natasha Benn