CAMBY — There was a time when doctors predicted Braden Tamosaitis would not be here. Diagnosed with spina bifida while he was still in the womb, Braden’s parents were told that he might not survive birth and if he did, he would have little cognitive ability.
But miracles come in small packages, and Braden is now 7.
He’s undergone 15 surgeries and has additionally been diagnosed with hycrocephalus and Arnold Chiari II malformation, but that’s not getting in the way of his weekend plans.
When the Indianapolis Colts play the Green Bay Packers this Sunday, Braden will be on the field, flipping the coin at midfield. He’s doing the same today at a University of Indianapolis football game, and next week he’ll head off to Disney Land as part of the Make A Wish program where he’ll go trick-or-treating with Jake and the Neverland Pirates of the famed Disney children’s show.
The Tamosaitis’ story is one of extreme perseverance in the face of impossible tragedy. Braden’s parents, Kevin and Becky, had another son, Nathan, who they lost after only six weeks. He also suffered from spina bifida.
In addition to Braden and Nathan, they have a 14-year-old daughter, Sierra. The family has started a charity in Nathan’s honor which they call Nathan’s Playroom.
Spina bifida is a birth defect in which the backbone and spinal canal do not close before birth. Hydrocephalus is a buildup of fluid inside the skull that leads to brain swelling, also known as “water on the brain.” Arnold Chiari malformation is a condition that consists of a downward displacement of the cerebellar tonsils.
Kevin said his son has “basically grown up at Riley (Children’s Hospital).”
“A couple of years ago, our family became involved with Dance Marathons, which are college and high school level fundraising events for Riley,” he said. “At these, we shared Braden’s story and our journey through Riley. One of the Dance Marathons was involved with UIndy, which is how Braden got invited to be the coin toss kid for this Saturday’s UIndy game, which is their homecoming game.”
Following that up a day later will be his debut at Lucas Oil Stadium.
“Braden was asked by the Riley Children’s Foundation to represent Riley and participate as the Coin Toss Kid,” Kevin said. “Making this game even more special is that it’s his first ever Colts game and he’s a huge Colts fan.”
Braden, who is confined in a wheelchair, needs accessible seating and that usually means being with only one family member.
“Most of the time these tickets are hard to obtain, and even when we do, only one person can sit with Braden and the rest of the family has to sit elsewhere in a nearby section,” Kevin said. “However, with the tickets donated by the Colts, we’re in an accessible area and all sitting together.”
A week later, he’ll be heading across the country for his Disney excursion, which came as another surprise .
“He was referred by the doctor that performed his last surgery this past May, which resulted in an extremely difficult process and lengthy hospital stay,” Kevin said. “This last stay was 37 days, which is by far the longest yet of his 15 surgeries.”
Braden is at Riley at least twice a week for therapy and appointments.
But Kevin said his son’s constant fight, ongoing rehabilitation, and defiance in the face of impossible odds, all add up to Braden being an inspiration for others.
“During his last stay, Braden’s favorite distraction ended up being a beach ball,” he said. “It was the perfect toy as he could play with anyone and he didn’t have to do much while he was recovering. The ball could be hit all over the room and it wouldn’t hurt anything such as the medical equipment. He’d spend hours on end playing with the beach ball with anyone who came to his room, including nurses, doctors, visitors, and even people just walking by the hall.
“He ended up having several of the balls in his room, and one day he decided he wanted to give one to one of the little girls he saw in the hall all the time, another patient. He enjoyed giving her one of his beach balls so much, he made me go to the store to buy more beach balls so he could give them to all the other kids on his unit. He told every visitor that they were invited to a big cookout after he got home, which was news to us. Then when we got home and we were planning his party, he decided he wanted everyone who came to bring beach balls to donate to Riley.”
They ended up collecting 165 beach balls and delivered them to the Child Life Department there.
Kevin says Braden’s journey has just begun, as he’ll face countless more surgeries and other issues along the way.
“It’s hard to really think about how his condition has affected our lifestyle, as it seems that this is just what life is like,” he said. “Our everyday normal as a family may seem overwhelming from the outside looking in, but to us it’s just life. Our family has been through quite a bit over the last 10 years and we have a true appreciation for the people at Riley Hospital.”
Kevin said they share their story in an effort to help create more knowledge and research for spina bifida, as October is it’s awareness month. There is no known cause of spina bifida, though there are identified possible genetic factors.
In addition to his Coin Toss Kid status for the weekend, Braden and his family will get limousine transportation to the game at Lucas Oil Stadium. He’ll also receive an autographed Colts photo and personalized jersey.
“Braden is an amazing boy that hasn’t let his condition define him or slow him down one bit,” Kevin said. “He’s an extremely social and engaging boy that loves to talk, make new friends, and be involved in whatever he can.”
To learn more about the Nathan’s Playroom charity, visit the website at nathansplayroom.org or e-mail Kevin at admin@NathansPlayroom.org.