There aren't many things in this world that can get this fat tub o' lard columnist to lace up his sneakers and go for a fun run. ("Fun run." Now there's the mother of all oxymorons.)
Not many things, but Hillary Wheeler is definitely one of them.
On Saturday, a group of people whose lives have been touched by this adorable little girl and her story will gather at Boondocks in Kaysville for the Hope for Hillary Family 5K Fun Run/Walk. My wife, clearly angling for my life insurance payout, has already signed us up for the event.
On a recent evening at the family's Kaysville home, Hillary, who turns 2 years old in July, is wearing a pink knit dress printed with the defiant slogan "You can't scare me, I've had brain surgery." She contentedly scoots around the floor, one leg tucked underneath her and the other extended out. She propels herself by scooting with her left leg and left arm.
"People talk about her cute little scoot," mother Natalie says, "But she's scooting like that because her right side is shut down."
Doctors did that to her. On purpose.
"When she had her surgery, we basically gave her a stroke on her right side," Natalie said.
Hillary is the youngest of five children born to Chad and Natalie Wheeler, who both grew up in the Top of Utah.
"She was our little surprise," Chad admits, smiling at Hillary.
Although seven weeks premature, Hillary appeared to be the typical, perfect baby on the outside -- requisite number of fingers and toes, all the proper responses to external stimuli, everything a parent could ask for.
Then, at 8 months of age, something happened. Chad and Natalie had taken Hillary with them on a Mexican cruise, celebrating the 50th wedding anniversary of Chad's parents.
On one of the final days at sea on the cruise ship, Chad was holding Hillary, who was almost asleep. Suddenly, she opened her eyes and gave her father what he describes as an "odd" look. Then she held her breath, started turning blue, went rigid, started jerking and drooling. After what seemed like an eternity, she started breathing again.
Let's face it, there's really never a good place for your infant child to have her first seizure. But when you start talking worst places, a cruise ship would pretty much rate near the top of the list.
"We were in the middle of the freaking ocean!" as Natalie describes it.
They took Hillary to the infirmary, where Chad says the doctor basically "blew it off." She had more seizures that day.
"We went to our room that night," Chad says. "And we cried and prayed and cried and prayed," Natalie finishes the thought.
The next morning, Chad, Natalie and Hillary were waiting outside the infirmary when it opened for the day. Fortunately, a different doctor was staffing the infirmary this time.
"Hillary had a seizure with him standing there," according to Chad. "The doctor immediately turned white. He said, 'I'm deeming this a medical emergency; we need to get her off this boat.' "
Back home, at Primary Children's Medical Center in Salt Lake City, Hillary's CT scan looked good.
"We thought she had a tumor, so we were relieved when they said they didn't find a tumor," Chad said. A short time later, however, a resident doctor came in to see them.
"He said, 'You guys want to sit down?' and my heart sank," Natalie remembers.
Chad and Natalie were told their daughter has hemimegalencephaly, which, they were told, means "half big brain." The left side of Hillary's brain is bigger, and much smoother -- without the normal folds and creases -- than the other half. It was this damaged left side, which didn't develop properly early in the pregnancy, that was causing epileptic seizures in Hillary.
"It felt like someone took a baseball bat and hit me in the stomach," Natalie said.
Over the next two months, Hillary would have 700 seizures -- up to 50 a day at one point. They know this, because they record every one in the dreaded "red book," a notebook the couple keeps with all the particulars on each seizure.
On May 23, 2012, doctors performed a hemispherectomy, severing or removing all connections with the left side of the brain. They were basically sacrificing half of the brain in an attempt to stop the seizures.
"We just thought that the best chance she'd have is to basically take out half of her brain," Chad said. "The hope is, if it's done early enough, the right side of the brain will take over for both sides."
Hillary had the surgery, and the seizures stopped.
But on the evening of March 12 of this year, as Chad was changing Hillary's diaper, she suddenly raised her right arm rigidly, and jerked her head to the right. The seizures were back.
"I sobbed that whole night," Natalie says.
The thinking is that the first surgery didn't quite sever all connections with the damaged left side of the brain. So on May 23 -- one year to the day of her last surgery -- Hillary will be at UCLA, where doctors will attempt to stop her seizures once and for all.
"I'd give her half of my brain, if I could," Natalie says.
The Wheelers' hopes for their daughter are fairly simple. They hope one day she'll be able to walk, feed herself and "go potty," all on her own. After that, it's icing on the cake.
"We know she'll be with us for life," Chad says. "She'll be our little sidekick."
Knowing this, there was a time Natalie worried about who would take care of Hillary if she outlived Mom and Dad. She doesn't worry anymore.
"When we broke the news to the other kids -- told them she wouldn't be able to marry or have kids, or have a life of her own like they will -- they all started crying," Natalie said.
And then, those four siblings did something wonderful, according to their mother. They started fighting over who would get to take care of Hillary down the road.
"I get to take her," said one. "No, I get to take her," argued another.
Chad and Natalie are surprisingly at peace with everything that's happened to Hillary over the past year.
"You grieve the person you thought she was going to be," says Natalie, "but we embrace who she is and where she's going."
You're invited to join the Wheelers for the Hope for Hillary Family 5K Fun Run/Walk at 8 a.m. Saturday at Boondocks, 525 S. Deseret Drive, Kaysville. My wife says I'll be there, but Chad has quietly assured me there's a shortcut at the 1.8-mile mark of the race -- a shortcut I fully intend to put to good use.
You can register for the event or get more information at www.hopeforhillary.org. Tell 'em the fat tub o' lard sent you.
Contact Mark Saal at 801-625-4272, firstname.lastname@example.org, or follow him on Twitter @Saalman.