Posted on
Tue, Aug. 16, 2005
She's smiling, she's sassy, she's dying
Her
doctors baffled, girl shrugs off mysterious illness that's killing her
Pioneer
Press
Emily Smith is playing golf. The 11-year-old
But the golf course is made
up of pixels on a screen, and her five-iron is a plastic joystick, part of the
video-game system with which she spends so many hours these days.
A mysterious disease is
quickly killing Emily's nerves, sapping the strength from her muscles and
keeping her from playing the sports she loves.
This strange illness and
Emily's engaging personality have made her something of a local celebrity: She
has met her favorite Twins players, ridden in parades, swum with dolphins and
appeared on TV.
Her parents say that while
they appreciate the attention, they'd gladly trade all the excitement for a
normal life without the ever-present fear of their daughter's death.
A year ago, Emily ran around
outside like any other kid, shooting hoops and taking karate lessons with her
mother and sister. Now, she can no longer walk or lift her left arm.
"Sometimes we have to
feed her," said her mother, Anne Lethert-Smith.
"Her whole body is like a wet spaghetti noodle."
Neither Emily's regular
doctors nor experts from the Mayo Clinic in
"It's very difficult
when children have any illness that we can't cure," said Dr. Nancy Kuntz,
a consultant in pediatric neurology at the Mayo Clinic. "The additional
stress in some circumstances and I think with Emily's is her progressive
weakness is not following a pattern that can be clearly identified."
Emily's situation is rare,
said Kuntz. Because her disease has gotten gradually worse, logic says that it
will continue to progress, eventually affecting essential functions like
breathing and swallowing.
And so her
parents are preparing for the worst, remodeling the lower level of their house to
accommodate Emily's wheelchair and adding heart and lung doctors to their
stable of specialists.
But emotionally, Emily
remains as she's always been — happy and sassy.
"She doesn't view
herself differently and doesn't think anyone else does," her mother said.
Emily stages staring
contests with her 9-year-old sister, Gracie, plays
pranks on cousins and is eager to talk about Twins catcher Joe Mauer, whom she
calls "my fiancé."
"Can I whisper
something in your ear?" she'll ask a stranger, just minutes after being
introduced.
She's that kind of kid.
Emily's father, Mike Smith,
is a former
The family's nightmare began
last September, when a teacher at Emily's school called to say she'd noticed
Emily limping on her left side. Blaming the bunions Emily had been born with,
her parents made an appointment with a surgeon to get them removed.
He took one look at the way
Emily's foot pointed inward and told the family they needed to see a
neurologist.
At the appointment with the
neurologist, Dr. Betty Ong of St. Paul's Gillette
Children's Hospital, the Smiths sat in shock as she threw out several
hypotheses, each scarier than the last. Ong wanted to
test Emily for a rare but treatable autoimmune disorder, along with polio,
multiple sclerosis and the fatal nerve disease ALS.
"Did you know that her
whole left side is weaker than her right side?" Lethert-Smith
recalled Ong asking. The Smiths didn't.
"I just felt
blindsided," Lethert-Smith said later.
"This was a completely foreign environment that I knew nothing about. It
was like, polio, today? This cannot be happening."
Tests at Gillette and the
Mayo Clinic failed to find Emily's problem, and she continued to get weaker.
Doctors suspected ALS, but the only test for the disease came up inconclusive.
In January, they predicted
Emily would be in a wheelchair by fall. By March, she was using one. The family
bought her a motorized model, which she named "Wally" after Wally Szczerbiak of the Timberwolves.
Emily became skinny, her
muscles hanging limply off her bones. The weakness spread from her legs to her
arms and then to the trunk of her body.
In May, Lethert-Smith
found a letter that her daughter had written. "Dear God," the letter
read. "Please help me get better and my legs not to get any weaker but
stronger again and I will always pray for you god."
Whether or not God was
paying attention, other people were.
For months, the Smiths had
been holding onto an application from a local group called Wishes and More,
which specializes in making the dreams of seriously ill children come true. Lethert-Smith felt that asking for a wish for Emily would
be admitting defeat and acknowledging that Emily was going to die.
Finally they met with the
group's president, Karla Blomberg, who was touched by Emily's situation. The
organization provided theater and sports tickets, and planned a special trip
for Emily to
"My favorite thing was
feeding the giraffe," she said.
Knowing that Emily might not
be able to celebrate her 12th birthday in September, her parents held an early
bash in June, calling it "the mother of all birthday parties." Five
hundred people attended, including the St. Paul Winter Carnival royalty, the
Vikings cheerleaders, the Twins' mascot and state elected officials whom
Emily's father had met in his years as a
Emily quickly made friends,
and before long her calendar was flooded with invitations.
It has been a summer any kid
would envy. But for Emily's parents, it has been bittersweet.
"When you're getting
these special things, you're always reminded, my kid's here because she's
dying," Lethert-Smith said. "I'd rather go
back to having a normal life and have my kid be a nobody."
The Smiths worry that as
time drags on, doctors will lose interest in Emily's case. Even if they cannot
cure her, diagnosing her illness would affect the whole family.
"We need to know, is
this genetic?" said Mike Smith. "Is it something we're eating or
breathing or ingesting? What about (Emily's sister) Gracie
and her kids?"
He also feels helpless that
he can't save Emily. "You're supposed to be the protector," he said.
"But you can't even tell what it is to protect them from."
Emily, meanwhile, wants only
to be a normal child and has insisted on attending middle school in the fall.
When Gov. Tim Pawlenty stopped by her birthday party,
she said hello but informed him she had to leave to talk to her school bus
driver. At the Oakdale Summerfest parade, where she
rode on one of the floats, she spent the entire time handing out candy to other
kids.
"I am so humbled by
Emily," said Laurie Weeks, a Wishes and More volunteer who co-owns a
semi-pro football team and invited Emily to their games. "I have never met
a child so sick that is more worried about everybody else than herself."
"Most kids would have a hard time dealing with this, and she's just pretty happy," said Emily's mother. "That's what makes you think, why her?"