4-year-old grapples with disease
Basehor area family hopeful new treatment affects rare affliction
The pond out back is vacant and toys are tucked in the barn. The sun is shining and the sky is deep blue, but Basehor area youth Ethan Basler can't come out and play. He'd sure like to, but mom and dad won't let him.
Ethan, a 4-year old, has his mother's eyes, his daddy's haircut, the spunk of an alley cat and the motor of a Kentucky Derby racehorse. He also walks with a bad limp, courtesy of a Bo Jackson-like right hip afflicted with a rare blood disease that's destroyed part of his leg.
The injury means that on days like today -- or any other -- Ethan can't go rip-roaring to play or explore his parent's 30 acres of land near their home on Evans Road.
Despite his biology telling him otherwise, his physical activity is strictly limited. He thinks it's all because of that blasted doctor.
"A million times a day," his mother, Heather Basler said. "That what no is. ... He's heard it enough to know he doesn't like the doctor.
"He usually doesn't give me much of a fight. It's when his buddies are around that he gives me the most fuss."
Legg-Calve Perthese Disease is a rare illness -- it's found in one of every 1,400 children -- that interrupts blood flow and essentially erodes the ball of the hip. An X-ray of Ethan's midsection provides a glimpse into the disease: his left hip is normal, but there's a large gap between the ball of his right hip bone and the socket.
The X-ray was taken May 5. Ethan's hip grows worse by the day.
Doctors have told Ethan's parents, Heather and Beau, that their only son should be kept from running, jumping and other rigors associated with normal, rambunctious play for children his age because the strain could exacerbate the problem.
That means no wrestling with his sister, an equally active, Ella. It means no trips to the pond out back where a paddle-boat, slide, swing and other fun stuff wait. It means no sports, at least for now.
On this day, when visitors are over, Ethan is putting on a show. He gets a sudden burst of energy and bolts across the living room floor, and later a wooden deck outside, like a street dragster that just got the green light. His parents throw up the yellow flag for caution.
"You better stop it, boy," said Beau with a look on his face mixed with amusement and concern. "He likes to show off. When people leave, he slows down."
Currently, Ethan undergoes twice-daily bouts of physical therapy at home. The therapy sessions help, but Ethan still has a limited range of motion in his leg and sometimes the pain keeps him awake all night. His parents are hoping an upcoming procedure provides a long-term solution.
In June, Ethan is scheduled to undergo an experimental, but aggressive, new treatment that entails injecting his hip with botox and that could begin the process of repairing his tiny, wounded leg. If the treatments don't work, Ethan would need surgery.
The Baslers have heard "nothing but good things" about the procedure. However, there is some question whether their health insurance will cover the costs. If it doesn't, Ethan would need surgery, and with that comes a litany of potential dilemmas.
With surgery, Ethan would be required to be in a cast for three months and in a brace for another year or two. The cast and brace would mean other obstacles, such as buying a wheel chair and installing ramps, new doorways and possibly refitting the bathroom at the family's home. He could also miss a year of pre-school.
"It's a life-changing disease," Heather said, "but you know, kids can adjust better than adults. It's the strangest thing."
Adjusting to life with Ethan's illness hasn't always been easy for the Baslers. While their primary concern is the long-term health of their son, the couple, both of whom are sports enthusiasts -- she participated in martial arts for five years and he is the head baseball coach at Piper High School -- is troubled by thoughts that Ethan might not be able to play sports for the next few years.
"We're all athletes," Heather said. "It's a big concern for us."
"All we do is sports," Beau said. "It's going to be hard, but whatever he does is going to be all right. Who is ever guaranteed their kids are going to do sports anyway?"
The couple said the lingering question over his future athletic career is a mild one compared to what doctors initially thought might be wrong with Ethan. A year ago, his parents noticed Ethan limping badly and took him for a check-up.
Doctors tested him for lupus, leukemia and other serious illnesses. The Baslers prepared themselves for the worst.
"They start throwing those big words at you and you're not sure what to do," Beau said.
Eventually, the diagnosis came back and the family breathed a sigh of relief. Since then, they've spoken with the parents of several children who've made successful recoveries from the illness and are confident Ethan will make a full recovery and be allowed to live a normal life.
"We're hoping he gets better and (we believe) he will," Heather said.
"We want him to have the same chance as everybody else," Beau added.
On this day, what lay ahead matters little to Ethan. The only future he's concerned about is the one that has him penciled in to see the new "Revenge of the Sith" movie Thursday night. He's prepping for the premiere by watching a cartoon "Star Wars" DVD.
His favorite characters, Yoda and Obi-Wan Kenobi, pop on the screen and excitement bubbles in his eyes. Soon, though, he forgets the small screen and begins a wrestling match with Ella. She has the upper hand at first, but suddenly Ethan, bad leg and all, reverses Ella's hold and takes control.
Victorious, he smiles proudly at his parents, who chuckle at the sibling rivalry. Instead of warning him away from the friendly match, Heather and Beau gave him a rare moment of unabashed play. After all, if anyone's earned it, it's Ethan.
"The best thing to do is avoid it," Heather said. "He's not supposed to run, jump, wrestle. ... Sometimes it's a little difficult to stop him."
More like this story
- Kansas City Connection: 'Christmas Cheer' from a new 'Nutcracker' to Charles Dickens
- Kansas City Connection: It’s showtime for theater festivals
- Kansas schools, colleges, hospitals would feel sting of cuts
- Bike Show honors Kobi’s founder, benefits Vaughn-Trent
- Alarm clocks 'hated' but necessary since ancient Greece