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‘An everyday hero’

Even after losing him, Bennett Buckelew’s parents celebrate his life

Posted: April 4, 2014 2:36 p.m.
Updated: April 7, 2014 5:00 a.m.

Troy Buckelew holds Bennett, his son, at his home.

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“Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be” Psalm 139:16

Bennett Buckelew had 412 days -- more than doctors expected, yet not as many as his parents, Troy and Mary, would have hoped for. For his Celebration of Life service, 412 balloons were released into the sky representing each day in the life of a much cherished baby boy.

Troy and Mary Buckelew, Bennett’s parents, met at the University of South Carolina (USC) - Sumter 13 years ago. Both were majoring in business and ended up having a few classes together.

“We dated for quite a while,” Mary said, recalling the early days of their relationship.

Troy admitted that he was slow on what he called the “engagement process.”

“It was OK; it was definitely worth the wait,” Mary said.

The Camden couple married on June 13, 2009, and welcomed their first child, Bennett Keegan Buckelew on January 9, 2013.

Bennett’s parents eagerly awaited his birth, taking fun photos of Mary’s growing belly as the weeks passed. Mary and Troy kidded one another about naming their son Optimus Prime from the Transformers.

After doctors delivered Bennett by C-section, they told his parents that he would be going to the nursery and then be brought back to eat. Instead, Bennett had to be taken to the NICU because he was having respiratory issues. It was the first indication something was wrong.

Throughout Mary’s pregnancy, the Buckelews had no warning that their son was severely ill. The only thing noted was that Bennett appeared to be a small baby.

“We knew that he was going to be smaller, but I was a very small baby and (Mary) was too. So the doctors were like, ‘He is probably going to be a small baby, we see this all the time,’” Troy said.

“I think the ultrasound was showing that (Bennett) was 4 pounds but … nothing led us to anything like we were suppose to expect … we came in the hospital expecting to take our son home,” Mary said.

Bennett was born with a rare medical condition doctors believed to be a severe form of Ohtahara’s Syndrome. About 10 days after he was born, doctors explained that Bennett’s brain was underdeveloped and that was why he was not able to swallow or suckle. He was also later diagnosed with infantile epileptic encepholopathy. Bennett’s brain stem and his spinal cord were so underdeveloped that he would only be able to function as a newborn.

“His brain abnormalities were so severe that he didn’t have the basic functions to learn to roll over or to crawl, he stayed like a newborn the entire time and his respiratory system suffered,” Mary said.

There was little Bennett’s doctors could do for him.

“It’s a very rare form of epilepsy and most babies don’t survive. It’s so rare that it is kind of like winning the ‘crummy’ lottery when it comes to disease. It’s something that they can’t cure, they don’t know that much about it,” Troy said.

As it would be with any parents, the news about Bennett’s condition was very difficult.

“We did speak to certain people who just kind of showed up and helped us realize that we could do this … we said we can do this, and just went from there. It sucked at first and we did cry a lot and I did get sick to my stomach just thinking about this stuff,” Troy said about processing what his family would have to go through.

Both Troy and Mary were prepared to fight for their son, give him the best care they could and hold on to hope.

“We thought, this is reality -- now what can we do? We will provide the best life for him, and that’s what we did from that moment on,” Mary said.

Bennett would require uninterrupted care 24 hours a day, 7 days a week.

“We decided we were going to do this as a team.” Troy said

“You know … we expected to go home with our baby … but if this was going to happen to anybody…we are so glad it happened to us. Why not us? Because we would take care of Bennett and do everything in our power to make him comfortable … I would pick him every single time,” Mary said.

“I think my whole life prepared me to take care of him.”

Bennett’s adventures

“We hated having to leave our boy in the hospital and stay in a hotel -- we realized that we couldn’t afford that very long so we had to go home -- we should have taken advantage of the Ronald McDonald house.” Troy recalled about the early days of Bennett’s life.

The Buckelews went to more doctors’ appointments and there was worse news about Bennett’s condition as his parents learned that he could not see, hear or feel.

“We (were) taking Bennett to doctors appointments and every time we went somewhere it was more bad news, nothing but bad news, but we focused on the positive, and that’s where the adventures started,” Troy said

During a hospital visit in May, Mary picked out a Superman onesie for her son to come home in. Troy and Mary hoped during this visit that their son would be able to stay off of his nasal cannula, which helped him to breath, when he came home.

“He didn’t end up being able to come back off of it. So before we left, we put him in the Superman onesie anyway because he was coming home. We were celebrating no matter what; we just had to figure out what we were celebrating,” Mary said.

Troy created a scene on Bennett’s bed sheet so that it looked like he was flying over buildings as Superman. Bennett Buckelew had become a superhero.

When Bennett was feeling well, his parents took him on numerous adventures. For fall, his parents dressed him up in overalls and used leaves as props so that Bennett could “pick leaves.” On other adventures, Bennett got to be a policeman and an EMS first responder. Bennett’s adventures allowed the family to have fun dressing up their son along with giving them memories to cherish.

Team Bennett

The Buckelew family team expanded into the hundreds as the Camden community and beyond reached out to help the family.

“Random acts of kindness will keep you moving forward no matter how bad your day is, that’s how people were with us,” Troy said.

Troy and Mary were also astonished over how many people Bennett inspired.

USC held a dance marathon to raise money for sick children. At that marathon, a letter from Cocky about Bennett was read. Many of the participants wore Team Bennett bracelets and approximately $318,000 raised for Palmetto Health Children’s Hospital.

Family members and friends also came together to help raise money to cover Bennett’s medical expenses.

Since Bennett was not given long to live, the Buckelews continued to celebrate every milestone that came their way. Christmas was celebrated in July (with a visit from Santa Claus) as well as his birthday.

“We did his half birthday in July because we were going to celebrate our son. We wanted to make sure that we got everything possible in with him,” Mary said.

“What was cool about his half birthday was that one of our friends started a Facebook page to get cards sent to Bennett. We had over 1,000 birthday cards sent to Bennett,” Troy said.

“From famous people as well, that was really cool. Who gets that in their whole life?” Mary said.

It’s quiet

Bennett passed away on February 25, 2014. He lived long enough to see Christmas, celebrate his first birthday and to touch many lives. Doctors did not expect him to survive for that long.

“They sent us home May 21 of last year expecting him not to make it much longer and we made it all the way out of the hospital for 276 more days … that was very unexpected.” Mary said.

The best way to celebrate that was with a party, not a funeral.

“We’ve always lived in a happy place with Bennett -- we always celebrated and did fun things for him so the idea of a funeral just didn’t seem to fit … we want everyone to celebrate, have fun and to celebrate his life. How else would you celebrate a hero’s life than with a party?” Mary said.

“People came to celebrate the life of my little boy because they loved him,” Troy said.

After Bennett’s passing, the Buckelews are slowly adjusting to life without him.

“It’s so quiet at the house now,” Troy said, referring to the silenced machines that were used to help keep Bennett alive.

However, the Buckelews are finding how even though he is gone, Bennett’s legacy is continuing to impact their lives.

“We are still trying to figure out where to go from here. I think the path is being drawn for us,” Troy said.

Paying it forward

Troy and Mary want to help others, especially by supporting families who have sick children. One way they are doing that is by participating in a study on Ohtahara’s Syndrome with Boston University and Boston Children’s Hospital.

Troy had been in contact with them while Bennett was living,

“About 10 hours after Bennett passed away I was speaking with them, in tears. I really want something to happen so they can help families out, because we don’t know why (this happened). We don’t need a medical reason, but if whatever studies they do that can produce some sort of idea on why this may happen, maybe they can develop a test for this -- I think there is a greater good that can come out of this study and we want to participate in that,” Troy said.

The Buckelews have also started a non-profit organization called Everyday Heroes to encourage families with sick children and to help them find a bright place in what can be a dark time. They hope to bring their adventures to other children who are sick.

“Part of Everyday Heroes will be going to the hospitals and taking our heroes and princesses just to say hello to kids and brighten their day a little. That’s what we are trying to do for sure -- just show up for people and give them that little bit of hope, a little encouragement to keep them moving forward,” Mary said.

Troy and Mary are very excited about the organization’s playground that they are hoping to have built for children with and without special needs.

“The cool thing about this is that there is nothing like that around here. It’s kind of like a dream,” Troy said. “This is going to be an all-ability playground for children with special needs to play like normal children … kids deserve this and we have to give it a try.”

“It’s going to be amazing,” Mary said.


To help with Bennett’s medical expenses, A “Buckelew Barbeque” will be held April 16 from 11 a.m. to 1:30 p.m. Plates are a $7 donation and BBQ by the pound will be available for a $10 donation. For more information or to buy tickets, contact Britni Hartis at


For information about Troy and Mary’s nonprofit, Everyday Heroes, visit If interested in helping the Buckelews cover Bennett’s medical expenses visit And to keep up with Troy and Mary to learn more about their journey and about Bennett visit


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