BY BLAKE HEMPSTEAD
Below the surface Kasey Morley is a perfectly normal child. He loves camping, baseball, video games, the Anaconda Copperheads, Montana Griz and annoying his parents. But Kasey’s life is a challenge, even if every passing day you’re in his presence is a consistently uplifting experience filled with joy and optimism.
Just weeks into being 5-years-old, Kasey is rambunctious, outgoing and inquisitive. But his journey to this point has been anything but a walk in the park. Born with a severe cleft palate and skull and with the entire left side of his body smaller than the rest most likely caused from blood flow complications in the womb, Kasey makes the most out of his situation.
Leading into the 70th annual East-West Shrine All Star football game, the Bagdad Shriners selected Kasey to be the Patient Ambassador for the event – an honor bestowed upon a child who has been treated at the Shriners Hospital for Children and also displays the heart and courage to fight their own unique condition inspirationally.
His life in the beginning was scary. Fearing the worst, his parents, Kevin and Alicia Morley, weren’t sure of the extent of the problems after birth. Those fears were realized when the most cumbersome of tasks associated with a newborn such as feeding, even breathing, were extremely difficult and even life threatening.
But what everyone who is close to Kasey knows now is he’s the ultimate fighter. His personality gives you a detailed look into how and why he stared death in the face and laughed.
The biggest of Alicia’s fears at first was having a son who wasn’t accepted by children his age – a fear that soon faded once she realized Kasey was the life of the party. He leads by example and pushes through his disabilities. His friends love him and they are hurt and concerned for his wellbeing when he’s gone for extended periods.
Even for those who don’t believe in a higher being, he’s a Godsend.
Kasey has learned to be comfortable in a hospital setting, but Shriners is his favorite.
“I like the play room, but not the surgery room,” as he describes the patient waiting area and what he knows to be the surgical unit in the Spokane, Wash. hospital, a facility specializing in orthopedic care.
His tone and mannerisms immediately went somber when he mentioned the latter, calling it the “mask room” – symbolizing the scrubs of the staff getting prepared for yet another surgery. Alicia says he’s grown too familiar with operating rooms in his short life.
“Leading up to now, he’s been (anesthetized) 11 times,” she said. “But he’s had upwards of 25 procedures. We’ve tried to coordinate as many surgeries as we could to limit his exposure to anesthesia as much as possible.”
Those procedures have included repairing his skull, palate, orbital and other facial bones, nasal passage and hands.
Kasey’s cranial surgery was handled by a specialty team in Seattle, and was the most dangerous thus far. The six-hour procedure helped reshape and mold his cranial cavity to where development of his brain wouldn’t be impeded.
What doctors found was Kasey had a cranial cleft so his face didn’t fuse all of the way, and when his skull fused, it did in places it wasn’t supposed to.
“Babies normally have their soft spots so it gives the brain room to grow, but his soft spot on the right side was fused so it was pushing and pulling his facial bones,” Alicia said.
Calling the six hour surgery, “The toughest one we’ve been though,” should be an understatement, however when you have to endure so many through such a short amount of time it would be difficult to gauge the worry associated with any and all procedures.
The family will endure another cranial surgery when he’s 8-years-old, this one designed to take the stress off his ocular nerves and facial bones associated with growth.
It’s a very risky surgery,” Alicia said. “Where his eyes are offset they will need to remove the suture and pull the skull back together. The most common risk is blindness, but we have to get it done because we don’t know how well he can see anyway.”
All of the rest of his surgeries have been done locally. His facial procedures were performed by Dr. Stephen P. Hardy in Missoula and all of his hand and orthopedic concerns have been dealt with directly by Shriners and Dr. Anthony M. Sestero.
“Dr. Hardy is awesome with Kasey, we can’t say enough about him and the work he’s done,” Alicia said. “It’s been suggested we go to Helena (for orthopedics) but the Shriners have been so amazing with him we wouldn’t even consider it.”
Because of the problems in utero, Kasey’s whole left side is underdeveloped.
“His leg and arm are smaller along with all the other bones on his left side, and you can even argue his face his smaller on that side,” Alicia said. “But they don’t attribute it to anything other than blood flow during development.”
And now that Kasey’s ambitious nature is taking him into more activities, such as his love for baseball, Alicia and Kevin worry about his future mobility.
“We’re hoping his development doesn’t limit his ability to be active, it’s something we worry about a lot,” she said. “We will need to see Shriners from here on out.”
OVERCOMING HIS CONDITION
Sitting on the sofa, Kasey is surfing his iPad for games and through the camera roll. Several times he’s told to put it down to answer questions. He declines and ignores his parents just like any other child his age. Kasey isn’t interested in talking about himself. He does, however, show me a colorful rock he was given from a trip to Virginia City.
“Is that your finger,” I said jokingly. He laughs. “No, it’s my rock,” Kasey says. “It’s mine, though.”
His left hand, which has a pin protruding from a surgically enhanced thumb made possible by Shriners bothers him, but not to a point where he feels he can’t use it. It once was unusable in terms of grabbing or holding items. Now, it can do both.
In fact, it’s not a thumb at all — not until Dr. Sestero made it from an undersized index finger.
“He is truly amazing,” Alicia said. “He dissected his whole hand and moved it on top of the existing thumb. Now he can grab and hold things with it.”
The Morley’s don’t have to hear Shriners has world-renown surgeons available, they experience it every time they walk through the doors.
“When Kasey was at Deconess in the (Neonatal Intensive Care Unit), the nurses told us not to worry about anything, Shriners would take care of everything,” Alicia said. “They were right. They care so deeply about the patients and their recovery. It’s all about the kids.”
SCHOOL IS HIS FAVORITE
For now, it seems Kasey is free of any significant learning disability. Doctors have warned of Schizencephaly, which are slits or clefts in the cerebral hemispheres of the brain that can cause developmental problems such as dyslexia and speech and language comprehension. But for now, Alicia sees nothing but growth in Head Start.
“He’s developing really well, and he’s keeping up with all of the other kids,” Alicia says. “I was really worried about school. But they’ve been awesome, especially Trevin and Justine (Hempstead). They are so good with him.”
Even since the first day he walked through the doors at Head Start, Kasey has been ready to learn. His presence lights up the room and he immediately fills it with song and laughter.
“From the first day of school, all the kids were crying and they were upset being left alone,” Alicia explains. “Not Kasey, he was dancing and ready to go.”
Kasey recognizes numbers and letters and follows along with reading comprehension with other students. But where he struggles is annunciating his words.
“A lot of people, kids especially, if they don’t understand him they get frustrated,” Alicia said. “But Kasey will take his time and sound out the word, even laugh at you because you can’t understand him.”
Ironically acceptance of his condition was one of the easiest things to overcome in school, but when the family is out to dinner or in public it can lead to some uncomfortable moments. Kasey takes any awkward glares with a grain of salt and chalks them up to others being inquisitive.
“When he sees kids staring at him he’s learned to ignore it because he knows what they are looking at – which is fantastic for us,” Alicia said. “It’s hard for us to take that sometimes. We know kids are completely innocent and don’t know any better, but it’s still so hard. I try to address it so they understand, and afterwards kids are very accepting.”
Kasey has been to Montana Grizzly football games as a guest of the Montana Hope Project, but he can barely hold his excitement leading up to this week knowing he will be directly involved. He loves football, and with all due respect to the East team, he will most likely be rooting for West when the whistle sounds. Then again, winner or loser, Kasey will be accepting nonetheless, it’s in his DNA.
When the Shrine Game was in Butte in 2013, Kasey was invited to some of the festivities leading up to the game. While there the Morleys met two Butte Central football players, Joey Joyce and Northey Trethaway, a meeting Alicia still cannot forget.
“I can’t tell you how impressive those to boys were,” she said. “They were so good with Kasey. I will never forget their kindness.”
This time around, Kasey will be front and center as the Patient Ambassador, a position in life he’s completely comfortable with.
“It was an incredible honor when they asked us to be part of the Shrine Game,” Alicia said. “Kasey has loved it. He got to hand out some of the plaques at one of the dinners, and they made him a plaque that we have hanging on the wall. He was so excited about it.”
West Team representative Jeff Hartwick of Butte thinks involving the patients directly with the players and coaches instead of showing images or telling stories hits home a little more.
“When the kids get here and they realize what and who they are playing for, the reaction is half shock, half emotional,” Harwick said. “As we get into the week they know the game is bigger than they are. We break down every practice with ‘It’s for the kids,’ – and it’s not just a saying, these players believe it.”
One of the most humbling experiences for all involved is dealing directly with the players.
“We had some of the kids come talk to us and it really impacted us,” said Sean Gallagher, Anaconda’s lone representative player in the game. “This week has been great. We are meeting a lot of kids and having fun. Kasey is a fun kid and looked really excited to see the football players. This is more than a game, it’s all for the kids.”
Kasey and others who need the services of Shriners Hospitals around the country will be celebrated with the football game Saturday at 7 p.m., but the true heroes are those who give selflessly in order to provide absolutely 100 percent free healthcare to children in need. As for the football players, they learn a deep understanding of what it is they are doing here during Shrine Week.
“Strong legs run so weak legs can walk,” Hartwick said.
All of those legs will be on hand Friday from noon to 2 p.m. at the South HPER Field on the campus of Montana Tech for Media Day. It’s kicks off the first time both teams will be together and introduces the public to the teams and coaches assembled to support this cause. Hartwick wanted to stress the public is urged to attend.
And there has been no better place financially to host this game than in Butte. When the first game was held in Butte in 2010, it was the largest donation ever received from Montana. In 2013, Butte’s game was the largest donation received in the country.
“We’re looking to go bigger and better every year,” Harwick said. “We’ve added golf touraments and even this year a live telethon simulcast where people can call in donations during the game.”
If you cannot make the game, statewide broadcasts are made available in the CW Network and radio stations thanks to Northern Broadcasting Network.