GREENFIELD — For Keegan Tutrow, a bad day is just as unpredictable as a good one. ¶ Diagnosed with Chiari malformation as a youth and living with it all his life, the Greenfield-Central junior truly doesn’t know what to expect every day he wakes up. ¶ Excruciating pain from pounding headaches isn’t uncommon nor are trips to the emergency room, if his symptoms spiral into an exhausting whirlwind of dizziness, weakness and illness.
Opening up his eyes is like rolling the dice with the outcome dictated by his condition, a structural defect in the cerebellum affecting balance and coordination.
“The headaches and stuff, you kind of get used to, but the day-to-day is a challenge,” Tutrow said. “It makes the good days all that much better.”
This past Sunday was exactly that for the 17-year-old, though it started out like any other, he recalled.
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Nothing out of the ordinary, Tutrow said, except for a call from his manager at the Qdoba in Greenfield asking him to come in for a last-minute afternoon shift.
“I was prepared to work for a few hours that day,” he said.
When Tutrow arrived, however, the restaurant was packed — but not with customers. The group awaiting inside was there for a surprise celebration and to present Tutrow with what he called his best day.
“He was completely shocked when he opened the door,” Lori Tutrow, Keegan’s mother, said. “He was very surprised. I could see the line of red growing in his face upon the realization. He was overwhelmed.”
Unbeknownst to Keegan, he was chosen by the AT&T Wish Connection, in partnership with the AT&T Indiana Pioneers, to have his wish granted.
‘DREAM COME TRUE’
The AT&T Wish Connection is a nonprofit that was formed in 2006 by AT&T employees who wanted to be directly involved in granting the dreams of children who have life-threatening or chronically-debilitating medical conditions.Aware of his story, Keegan was nominated and selected to receive the gift of a lifetime.
Greeted with decorations, balloons, and baseball-themed cakes by Kim’s Kake Kreations & Bakery, Tutrow’s wish was ceremonially unveiled — a five-day trip to Florida for him and his family to watch his favorite Major League Baseball team, the Boston Red Sox, in spring training.
Through the collaborative support of Qdoba, Hancock Regional Hospital, Moeller Printing, AT&T and the Indianapolis Mustang Club, Tutrow’s family flew out of Indianapolis on Thursday to take in two games at JetBlue Park at Fenway South in Fort Myers, Florida.
The family’s itinerary included a tour of the baseball facility, a Mustang Club escort to the airport and a round of golf at Arnold Palmer’s Bay Hill Club in Orlando.
As a special bonus, Keegan was presented with a Red Sox golf bag and a set of new clubs along with a declaration from Greenfield Mayor Chuck Fewell, announcing March 24 as “Keegan Tutrow Day” in the city.
“Saying it was a dream come true, that’s kind of an understatement. I’ve been dreaming of driving the Mustangs to the airport for the past four days,” Keegan remarked prior to embarking on his vacation. “And then getting there and watching the Red Sox and being able to tour the field is going to be amazing.”
The same can be said of Tutrow’s fortitude while contending with his rare brain disorder.Sharing the same condition as his mother and sister, Kaylee, 19, Keegan has undergone multiple surgeries within the past decade in search for a cure.
Chiari malformation causes a person’s brain to breach the spinal canal, and according to the Mayo Clinic, “it occurs when part of the skull is abnormally small or misshapen, pressing on the brain and forcing it downward.”
Keegan was the first of Lori and Dan Tutrow’s children to be diagnosed with Chiari malformation, but it wasn’t discovered right away.
The migraines, one of the prominent symptoms, first started when Keegan was in the second grade, if not before. His headaches forced him to seek relief in silent darkness and prolonged sleep sessions to ease the pain.
Numbness in his extremities developed over time along with other symptoms like trouble swallowing, fatigue and vision problems.
Desperate for answers, Keegan was repeatedly misdiagnosed by physicians until Dr. Jodi Smith, MD at Riley Hospital for Children reviewed his case and ordered a full spine MRI.
The results verified Smith’s initial prognosis, Keegan had Chiari I malformation and syringomyelia, which results in the blockage of spinal fluid to the brain, according to the American Syringomyelia & Chiari Alliance Project (ASAP).
Dr. Smith suggested decompression surgery, an operation where small bones are removed and shaved back near the back of the skull to reduce compression of the brain stem and allows the tonsils to return to a more natural position.
For some with Chiari malformation, the procedure isn’t necessary, but for others it can resolve most, if not all, of the issues almost immediately.
In Keegan’s case, though, surgery wasn’t the solution. While his symptoms improved, they returned, and he was later diagnosed with other related disorders called Ehlers-Danlos Syndrome and intercranial hypertension.Despite the seemingly never-ending discomfort, Tutrow has approached the situation with one purpose — not to let it beat him.
Every spring, he suits up as a catcher for the Greenfield-Central baseball team, playing junior varsity last season. When he’s not in the classroom or admitted in the hospital, he works and faithfully follows the Red Sox, a passion he shares with Smith.
“When I was younger, my dad being a Braves fan, I started out liking them, but I found the Red Sox when they won the World Series in 2004,” Keegan said. “It stuck since then.”
His favorite player was Jason Varitek, coincidentally a catcher on the curse-busting world championship club 12 years ago, until his retirement in 2011.
These days, the 6-foot-2 teenager looks up to 5-8 second baseman Dustin Pedroia.
In his bedroom, Tutrow displays his Red Sox pride with memorabilia and pictures cut out from magazines, proudly hanging on the walls, including several of the two-time World Series champ.
“It’s his height really,” Tutrow explained while referring to his fandom of Pedroia. “It just shows how you can push through the stereotypes as a professional athlete and anything really.”
His father’s peers felt the same when they heard of Keegan’s fight against Chiari malformation, which led to the AT&T Indiana Pioneers unveiling last weekend.
“I think it says something, especially because it wasn’t my dad that put my name in for it, it was his coworkers,” Keegan said. “I think it shows how much they all admire him and how he’s made an impact on them. That says a lot and the whole experience in itself isn’t something I’m going to forget anytime soon.”
DOSE OF GOOD NEWS
Initially, Keegan was interviewed as a candidate by the AT&T Wish Connection in July. As they sat down and surveyed his likes and interests, he outlined four specifics: Red Sox, baseball, golf and cars.“Pretty much everything, they incorporated,” he joyfully said. “They did a great job.”
No more so than with the first part of his journey, a Mustang convoy to the airport Thursday, which allotted Keegan an opportunity to drive a 1972 Boss 351.
“Very, very high horsepower. Very, very happy Keegan,” he said.
For Lori Tutrow, the ASAP support group leader in Hancock County, the best part of the experience will always be her son’s reaction when he heard the news, which she and Dan had to keep to themselves.
While it was “tough being good secret keepers,” she said, being informed of the itinerary details in December, a few difficult months were worth the wait.
“It’s been very touching. I think it’s given Keegan something to look forward to, something to be hopeful about, something to put his focus on in a positive light,” Lori said. “As an example, in December when we were last in the emergency room at Riley, he was really sick, holding a bucket. He stopped and looked at me and said, ‘mom, I wonder what my wish will be?’ That’s what this wish means to him. It gives him something to think about besides all the things that aren’t so great about his diagnoses and symptoms.
“After the trip, it will be something that will be a lifetime memory for him.”