Reece Bova was not quite a year old when his parents were told he won’t live to see his fifth birthday, that his heart will fail and there was nothing else to be done.

Refusing to accept that prognosis, Matt and Shannon Bova of South Toledo set out to find a doctor who would treat their son.

“We were told there was no one — no doctor, no hospital — who could help us, that the procedures he would need were too dangerous, that the risk far outweighed the reward,” said Shannon, 31, a Bowsher High School graduate and former Toledo Free Press employee. “We as his parents obviously were not happy with that response.”

The Bovas, who lived in Tennessee when Reece was born, sent his records to pediatric heart centers nationwide and were turned down by all but one.

They now travel to Boston Children’s Hospital a few times a year so Reece, now 2, can undergo a procedure that uses balloon catheters to temporarily widen the too-small arteries in his lungs, so his heart doesn’t have to work so hard pumping blood to his lungs.

“Because the arteries are so small, they can only dilate them so much,” Shannon said. “And once the arteries are opened a bit, they can begin closing again.

“The reason why they said it’s so risky and dangerous is because the arteries are so small that they are at risk of rupturing if they dilate them too much. If they do that, then he starts bleeding into his lungs and you may not always be able to stop the bleeding in the lungs. Obviously if your lungs fill with blood and they can’t stop it, then that’s it.”

The Bovas moved back to Toledo about a year after Reece was born to be closer to family.

Reece will likely need the artery-widening procedure for the rest of his life, but doctors are hopeful the frequency can be reduced.

“The analogy they gave us was if you take a balloon out of a package, it’s really stiff. The more you blow that balloon up and let the air out, it’s going to be stretched a little bit, and hopefully it will stay open longer,” Shannon said.

“The hope is we can do these every six months for a couple of years and then he may not need them as often, maybe once a year, maybe once every two years. We’re not there yet, so we don’t know, but we do know his body responds well to the treatment.”

The diagnosis

Reece was born with a congenital heart condition called Tetralogy of Fallot with severe peripheral pulmonary artery stenosis. He is not a candidate for a heart transplant because of his lungs and isn’t eligible for a lung transplant because of his heart. He was also born with only one kidney.

Shannon had no indication during her pregnancy that anything was wrong. But when Reece was born in March 2012, he was “silent, limp and blue,” she said.

“It was probably three minutes that passed and we finally heard him cry,” she said. “They initially thought the birth had maybe just stunned him a little bit and he would spend the night in the NICU and be fine. But he didn’t improve. That’s when they brought in the pediatric cardiologist.

“He was born at 9:23 at night and I would say by midnight we were in a tiny little conference room with the cardiologist, bawling our eyes out,” Shannon said. “We went to the hospital that day thinking we were going to experience happiness and everyone taking pictures; instead we experienced something much different. We experienced fear, the unknown.”

The new parents were told Reece had Tetralogy of Fallot, a series of four anatomical abnormalities of the heart.

“I was kind of numb at first,” said Matt, 30, a native of Dublin, Ohio. “It didn’t really sink in. I didn’t know what to think or what was going to happen down the road. Just the unknown was kind of scaring me at that point. All we knew was we had to take it day by day.”

The day after Reece was born, he was transferred to a children’s hospital in Atlanta where he spent 17 days in the NICU. He had a shunt placed in his heart at 6 months old and open heart surgery in December 2012 before his first birthday.

Doctors were puzzled when Reece didn’t show the improvements they expected after his open heart surgery and the Bovas were soon presented with more bad news.

“Typically kids with Tetralogy have their repair and grow up to lead fairly normal lives,” Shannon said. “Shaun White the snowboarder has tetralogy. There’s a couple of NFL football players. Things would be much different right now if it was only the heart.”

In February 2013 doctors discovered Reece also had severe peripheral pulmonary artery stenosis, a condition in which the arteries in his lungs are too small, putting pressure on the heart as it works hard to pump blood through the lungs.

“That was the day they told us that he would not survive to see his fifth birthday,” Shannon said.

Run for Reece

To help the family with medical costs, Shannon’s mother, Kathy Phillips, and sister, Jenna Phillips, 18, both of Maumee, have organized a nighttime 5K and one-mile fun walk fundraiser.

Run for Reece will take place at 7:30 p.m. Oct. 4 at Woodlands Park in Perrysburg, followed by a glow-in-the-dark afterparty. Cost is $25 in advance or $30 at the race. The race will not be timed and family-friendly events are planned. The organizers are also looking for corporate sponsors.

Money raised will go toward paying off existing medical bills and future trips to Boston Children’s Hospital. Reece’s next treatment will be in November or December, Shannon said.

“As a family, we just wanted to help,” Kathy said. “It’s very hard. You feel very helpless. You just try to be there for support because that’s all you really can do.”

“He’s my beautiful little nephew. I wouldn’t trade him for the world,” said Jenna, a recent Maumee High School graduate now studying nursing at Mercy College. “It’s just hard as family to sit back and listen to all the money worries and everything. We just wanted to help.”

Another way to help is to bring the flier found at the Facebook page “Run for Reece” to the Applebee’s at 531 W. Dussel Drive in Maumee on Sept. 17 to have 15 percent of your bill donated to Run for Reece. Participants will also get a $5 coupon for their next visit.

Progress

Because of his heart and lung conditions, Reece also has numerous developmental delays. He started crawling around 18 months and only recently started walking. He doesn’t talk yet and is still bottle-fed — apparently scared to eat after so many intubations during hospital stays, Shannon said.

He sees a physical therapist to work on his gross motor skills, an occupational therapist to help him learn to eat and a speech therapist to help him talk.

Frustratingly, one step forward medically often results in two steps back developmentally, Shannon said.

“From spending time in the hospital, you saw his muscles weaken a little bit so his mobility is not as good or just when we saw him start opening his mouth for a spoon, he went to the hospital and was intubated and came back wanting nothing to do with it,” Shannon said.

Matt and Shannon said they sometimes find it difficult to see other kids Reece’s age reach milestones he still struggles to attain, but then they remind themselves of everything he’s gone through and how far he’s come.

“[I feel] anger, jealousy, sadness, knowing that we are so far behind that,” Shannon said. “But then in the same breath, I think, ‘Well, you know what? Those kids have not had open heart surgery and have not been given the prognosis he was given.’”

“I just want to see him be a typical kid, just doing regular things like playing sports, playing in the grass, talking, eating food — all the things a lot of parents take for granted because their kids just start doing it on their own,” Matt said. “Just those little things are big for us.”

In other ways, Reece is like any other toddler. He loves watching cartoons, jumping on trampolines and “getting into things,” like any new walker, Shannon said.

“He’s made a significant amount of progress, but I would be lying if I said there wasn’t still a lot of fear of the future. Because while we know he responds well to the treatment, at any time something could change,” Shannon said. “At any time his heart could decide that it’s been working too hard and it doesn’t want to anymore. We’re trying to make that not happen by making these trips to Boston and continuing to be his biggest advocate.”

For more information or to register visit www.runforreece.com.

A group of speakers is preparing to give the “talk of their lives” in 18 minutes or less.

This is Will Lucas’ Third year organizing TedxToledo. toledo free press file photo by Joseph Herr

What they will talk about at the third annual TEDxToledo is being closely guarded for the first time in the event’s history, however, and will not be revealed until they appear on stage.

TEDxToledo organizer Will Lucas is keeping this year’s specific topics under wraps and will not disclose what audience members can expect at the daylong conference Sept. 18.

“We don’t reveal the subject matter of the talk until they’re on stage,” Lucas said. “Our goal, in an effort to continue to keep getting better, is to give people a chance to come and witness the event without any preconceived ideals. Come open and ready to learn and share.”

RELATED: Lucas: Dynamic experience

Lucas organized the first TEDxToledo in 2012 with the theme “You Will Do Better.” In 2013, the idea of improving the city continued with the theme “reIMAGINE.”

This year, the roster of 17 speakers will give talks on the theme “Human: Exploring the many dynamics of the human experience.” To view a listing of the speakers, go to www.tedxtoledo.com.

TEDxToledo is the local version of the international TED talks. The acronym stands for Technology, Entertainment, Design. TED is a nonprofit dedicated to spreading ideas in the form of short talks (18 minutes or less). Beginning in 1984 as a conference, today it covers a wide range of topics from science to business to global issues, according to its website.

“TED is … committed to ‘Ideas Worth Spreading,’” said Susan Zimmerman, executive assistant to TED’s curator in New York and a former Toledoan. “Those ideas vary in just about every way imaginable and can be seen in the most far-reaching corners of the globe, from the high-tech Vancouver stage of TED2014 to a chalkboard in a one-room hut in Malawi. … Our goal: to spark conversation, action and learning.”

The conference is a chance to bring people together and form connections, Lucas said.

“TED and TEDx events are the only places I know in the world where you can go to a conference and see a CEO sitting next to a farmer, and they are talking about the same thing,” he said. “For a moment in time, they are pushed in the same direction.”

Lucas and his organizing partners, Sam Melden and Molly Luetke, who started planning the event in December, decided to do something different this year based on advice from the international TED organization on ways to enhance their TEDx.

In the past, they normally would find speakers and then decide the topics of the talks. For this year’s event, they narrowed down the topics and then went in search of speakers.

“It kind of changed the way we thought. That has really enhanced it this year, “ Luetke said. “Our biggest challenge was to come up with topics. We wanted new and interesting ideas. Part of the problem was coming up with a subject that hasn’t been done before.”

That’s why organizers brought in another group of about eight people who could help identify topics and find speakers. The group gave great input and fresh ideas, Luetke said, giving organizers a conference with speakers who don’t resemble what would be considered a usual TEDxToledo event.

The speakers — seven women and 10 men — come from a broad range of professions and backgrounds.

There are professors, doctors, artists, a CEO and a mom.

“I’m super excited about the line-up and I think that they are people who do wonderful things in the community, but who are not necessarily people who have a platform on a daily basis,” Luetke said.

“Not everyone will agree with the idea the person has, but that makes for interesting conversation. We’re just hoping it causes further conversation and that’s what TED is all about. I think our speakers this year will really challenge folks.”

TEDxToledo speakers Eugenio Mollo, Maara Fink and Dr. Matt Roth.

Toledo Free Press photo and cover photo by Michael Nemeth

TED talks have a reputation for being cutting edge and thought-provoking.

“I’m more excited about these speakers than in the first two years combined and that doesn’t take away from the first two years,” Lucas said.

Maara Fink, clinical professor of law at the University of Toledo, is one of the speakers at this year’s TEDxToledo. According to TEDxToledo guidelines, Fink could not divulge any information on the topic she plans to discuss, but said she was honored the organizers chose her.

“I hadn’t necessarily thought I would ever be able to be a part of [TEDxToledo] but was certainly honored to have been asked and it was through a wonderful group of folks who put this panel together that felt that I might have something to contribute,” she said.

She knows not everyone will agree with her ideas or see things from her perspective, but she hopes to nudge people’s minds in a way that will allow them to see things in a different light, she said.

“We all think our ideas are interesting and unique and, for me, [the goal is] to define them in a way that’s interesting for a diverse audience and you hope you touch each audience member in some way,” she said.

Organizers selected the theme “Human” was selected after picking out particular topics they wanted to hear.

“I realized that all our ideas for talks seemed to hover around the idea of the human experience, and the name ‘Human’ just came to me during our organizer meeting,” Lucas said.

Back in 2011, Lucas got the idea to organize a TEDx event in Toledo after watching a video of Steve Jobs’ 2005 Stanford University commencement address, which was linked to the TED website.

At the time, Lucas, with his technology background, felt frustrated by the lack of a technology community in Toledo.

“I was tired of it,” he said. “[I thought] if I can bring that type of energy to Toledo it would raise the level of conversation. That’s why I got involved in it.”

This year’s budget from donations and sponsors is $10,000. That money will pay for the event facility, videographers and other expenses, Lucas said. The event is nonprofit, so all money from ticket sales will go toward the event or be donated.

Last year, money raised was donated to the Young Men and Women of Excellence program at Toledo Public Schools. Speakers are not paid.

Speaker Eugenio Mollo, a local attorney, called the process of developing a TEDxToledo talk “challenging.”

As speakers develop their talks, they meet with a TEDxToledo curation committee made up of a marketing representative and theater representative, among others, Mollo said. Each critiqued parts of his speech and give him pointers on how to speak more effectively.

“There’s a lot of support and practice and there’s a lot of effort that goes on behind the scenes of a TEDx,” he said.

As an attorney, most of Mollo’s public speaking experience has come in a courtroom.

“A lot of people think, ‘You’re a lawyer and this comes naturally for you,’ but this is a different environment,” Mollo said. “It’s a different audience and a different presentation style.”

Dr. Matt Roth, a primary care practitioner and physician for the Toledo Walleye hockey team, said he doesn’t necessarily consider himself an expert on any given topic, but was excited and honored to be selected as a TEDxToledo speaker. Although he couldn’t give away details of his topic, Roth said the TEDxToledo team coached him on his presentation and that the conference will be exceptional.

“We each had our individual sessions, but you arrive when the other one is finishing up so you have some overlap … so you get a little bit of a glimpse of what’s coming,” Roth said. “It definitely encourages me. All these other talks are great and they’re doing good things — a wide variety of different subjects that fall under the human emphasis.”

Tickets to the conference the first year sold out at $100 each. The second year, they were $75 with a buffet lunch included. This year, they’re $49. Organizers figured out if they don’t include lunch, they can reduce ticket prices, Lucas said. Lunch this year will be offered by local food trucks, which will offer reduced rates, he said.

If area residents find themselves hungering for TEDx talks throughout the year, they won’t have to wait until next year before Toledo hosts another one. New this year, Lucas said he has identified four “community stewards” who will oversee four “mini” TEDxToledo events to be held during the remainder of this year and into the next, Lucas said. Some of this year’s topics could become themes for the mini TEDxToledo talks.

TEDxToledo 2014 is set for 8:45 a.m. to 4:30 p.m. at the West Toledo YMCA/Start High School Theater at 2110 Tremainsville Road.

Also speaking will be Marjory Curry, Boyd White, Saga Shoffner, Diana Patton, Fritz Byers, Jennifer Rockwood, Jelani Exum, Dr. Johnathan Ross, Dan Rogers, Larry Meyer, Leslie Adams, Jason Quick, Bona Vega and Andrew Ellis.

For tickets or more information, go to www.tedxtoledo.com.

Editor’s note: Updated with response from HUD, comments from Marc Gerdeman and comments from Lisa Ward.

The City of Toledo received Sept. 9 the approval it sought from the U.S. Department of Housing and Urban Development (HUD) to potentially demolish the rest of the recently shortened smokestack at the former Toledo Edison power plant site in East Toledo.

The 75-foot stack will likely remain for now, but the approval from HUD gives the city the option to demolish it in the future without jeopardizing the HUD grant used to fund the project, said Marc Gerdeman, brownfield redevelopment officer with the City of Toledo’s Division of Environmental Services.

“If there’s any future redevelopment at the site, it may be removed, but for now it’s going to stay,” Gerdeman said. “I don’t really see it in the future being knocked down anytime soon. We’re keeping it until we hear otherwise from the mayor’s office.”

After two stacks at the site were imploded July 16, the city planned to shorten the remaining stack to about 100 feet. However, the Aug. 29 implosion left the 297-foot stack around 75 feet instead, including its 48-foot concrete base, said Bill Burkett, city commissioner for economic and business development.

The third and final smokestack at the former Toledo Edison power plant site in East Toledo was shortened by an implosion on Aug. 29. Cleveland-based B&B Wrecking has since evened out the brick on top for a final height of about 75 feet. The city is now deciding whether to keep the stack as is, turn it into a lighthouse motif or demolish it. Toledo Free Press photo by Sarah Ottney

“We knew there was a possibility depending on how that stack fell that there could be some additional damage,” Burkett said Aug. 29. “It looks a little short, we know that.”

Oklahoma-based Dykon Explosive Demolition Corp. was contracted by Cleveland-based B&B Wrecking by the City of Toledo to perform the implosion. A week after the implosion, B&B Wrecking returned to the site to even out the remaining brick to a uniform height.

Although the resulting height is still within the project’s planned scope, which called for stack to end up at 100 feet give or take 25 feet, many feel the shortened stack looks too short, Burkett said.

“The consensus was aesthetically we did not meet the preservation goal of keeping enough brick,” he said. “I think people thought with 50 feet of brick, aesthetically, it would look more like we were preserving a stack, but with only about 20 feet of brick you kind of lose that preservation affect.”

The city, with input from other groups including the Marina District Architectural Review Committee and the nearby National Museum of the Great Lakes, is now working to decide whether the leave the stack as it is, turn it into a lighthouse motif as has been suggested by Toledo Mayor D. Michael Collins or tear it down.

In the meantime, B&B Wrecking will return to the site to put a cap on the stack, Burkett said. The cap will be made of “marine-grade plywood,” he said, and will help protect the stack from damage caused by water seeping between bricks and then freezing and thawing over the winter.

The implosions, along with cleanup at the site and the preservation of a guard house structure, was funded by a $475,000 federal grant awarded to Toledo by HUD in fiscal year 2009.

The scope of the original project called for retaining a portion of one stack along with the guard house at the front of the site as historical preservation. The guard house, which had its roof replaced and windows boarded up, has been preserved for possible future use, Burkett said.

In order to consider demolishing the shortened stack, the city needed to request permission from HUD to modify the scope of the project.

If HUD had declined to allow the city to modify the project, the stack would definitely have remained, Burkett said, as the city would likely have been asked to reimburse the grant funding if it was demolished.

“If they want their money back, the stack will stay like it is,” Burkett said. “If we get permission from them … we’ll probably move ahead and take it down.”

The estimated cost to demolish the rest of the stack, including the concrete base, is $40,000, Burkett said. Where that money would come from has not been determined, but could come out of the city’s economic development fund if an economic development project is developed for the site, he said.

“A lot of it depends on what the plans are for that area,” Burkett said. “What we do next is figure out what’s next for the Marina District.”

The Marina District Architectural Review Committee approved the city’s plan to leave a 100-foot stack, but had preferred the preserved stack be higher than 100 feet, said City Plan Commission Director Thomas Lemon, a member of the five-person committee, which reviews developments in the Marina District overlay.

“There was a preference to keep the stack a little higher if possible,” Lemon said. “It was more in keeping with historical appearance and function.”

Lemon said there has not been another official committee meeting to discuss the site, but several members have weighed in since Aug. 29 to say they might support demolishing the stack.

“Since it turned out a little lower than what they had planned — although still within the tolerance — there is some support for removing the entire stack,” Lemon said. “At least one or two members feel that might be the best resolution at this time.”

Lisa Ward, public information officer for the city of Toledo, said the mayor still favored the idea of turning the shortened stack into a lighthouse motif, but nothing had been decided yet.

Lemon said the committee is generally not in favor of Collins’ idea to turn the remaining stack into a lighthouse motif, although there has not been an official vote.

“I think the ARC would prefer it maintain more of the original look of it as much as possible,” Lemon said.

Once the city hears back from HUD, the architectural review committee will set up a meeting to discuss, Lemon said.

Burkett and Lemon stressed no final decisions have been made.

“What we’re going to do with it, we don’t know just yet,” Burkett said. “We’ve been discussing options.”