HomeMy WebLinkAboutThe Citizen, 2017-07-13, Page 10PAGE 10. THE CITIZEN, THURSDAY, JULY 13, 2017.
Local family looks for answers at Mayo Clinic
A big trip
The Smith family is in the midst of preparing for an August trip to Minnesota and the Mayo
Clinic where Colton, centre, is hoping to find answers for an undiagnosed condition that leaves
him losing feeling in his limbs and suffering migraine headaches, among other symptoms. The
family is currently raising funds for the costly medical visit. (Shawn Lou
ynun photo)
By Shawn Loughlin
The Citizen
Blyth's Colton Smith and his
parents Jamie and Joanne have been
searching for answers for a rare
medical condition for the better part
of a decade and they hope to find
them at the Mayo Clinic next month.
Colton turned 13 years old in
March and has been struggling with
a condition that first began to show
symptoms when he was three years
old. Over the last 10 years, his
condition has left scores of doctors
baffled and he remains undiagnosed
as his health continues to deteriorate.
Jamie and Joanne say they moved
into their current house on Hamilton
Street in Blyth in 2007 when Colton
was three and it was right around
that time that he fell down for the
first time without cause.
After urging him to get up to no
avail, Joanne realized that he
couldn't stand up and she and Jamie
took their son to the closest
emergency room.
The diagnosis was simple at the
time: doctors said Colton had water
in his ear and that his momentary
loss of balance would pass in time.
One week later, however, it
happened again. Colton fell and
wasn't able to get back up. His
parents again took him to the
emergency room, but by the time
they arrived, Colton was back to
normal and they again left without
answers. This time Colton's
symptoms were dismissed as the
actions of a clumsy toddler.
Colton's condition persisted
through his early years, Joanne said,
where his legs would crumple
beneath him and then between 20
and 30 minutes later he'd be fine.
Soon, however, he began subtly
slurring his words and the family
was advised to take Colton to
London for further testing.
Colton then began having
migraine headaches and his
symptoms were explained as side
effects of childhood migraines, but
the Smiths sought a second opinion.
Their son then went through a
battery of tests, including a spinal
tap, an electroencephalogram (EEG)
and a magnetic resonance imaging
(MRI) test, none of which turned up
any results that would be considered
out of the norm.
At that time, Colton was
diagnosed with developmental co-
ordination disorder, a diagnosis that
some doctors still stand by, but
Joanne said that the motor skills
disorder doesn't explain all of
Colton's symptoms, specifically his
episodes of paralysis and falling.
As Colton has advanced in age, his
parents have also noticed
developmental delays that have
caused their son to fall behind his
classmates both physically and
educationally. This degeneration,
however, has accelerated in recent
months, Joanne says.
While Jamie and Joanne had
observed their son's condition
continually slipping over the years,
Joanne said last November she
noticed a large drop-off in Colton's
condition that has the family
worried.
Since last fall, Colton is often
extremely fatigued after very little
activity, he's falling and losing
feeling in his limbs much more often
and there are times when he speaks
that people can't understand what
he's trying to say.
Colton's Grade 7 teacher at St.
Joseph's Elementary School in
Clinton says that by the end of the
school year, Colton was unable to
solve math problems that he could
back in the fall.
Because he has difficulty
communicating, Colton can often be
found using an iPad. Joanne says
that he does most things now with
the aid of a computer and Colton
says it's rare that he isn't
experiencing some sort of headache
pain throughout the day.
Speaking with The Citizen, Colton
says that he longs to go to the park
and play sports with friends and
classmates, but if he does leave the
house, he fears what might happen.
Recently, Colton said he went
limp at the park and was unable to
help himself up, which left him
embarrassed and nervous; unsure of
how the other children would react
to what was happening to him.
He desperately wants to be just
another student at his school, as he
sits on the cusp of entering high
school. His favourite subject in
school is gym and his favourite
sports to play are baseball and
soccer, although his ongoing
challenges make it more difficult
every day.
He also has special pedals for his
bike to keep his feet secure, but even
that has become a challenge.
Colton's sisters are often with him
to ensure that he's safe if he has an
episode.
He says he wants to grow up and
live a normal life where he can drive
a car, maintain a job and get married.
He says he wants to be a mechanic
when he grows up, although he has
admitted to his mom that he has
higher aspirations of being a boxer
one day.
He says he hopes that the Mayo
Clinic in Minnesota will turn up
answers so his parents and siblings
will be happy. But he admits that a
diagnosis and a plan for the future
would also put a smile on his face.
The Smiths have already begun
the application process for the Mayo
Clinic and Colton has been accepted
as a patient. The family is now
facing large out-of-pocket expenses
for the care and the trip due the
structure of healthcare in the U.S.
They have already had to pay $7,000
for Colton's initial work and they
have yet to talk to a doctor.
Jamie, Joanne and Colton will be
travelling to Minnesota on Aug. 7
and they are expecting to be there
from seven and 14 days for the
consultation process and hopefully a
diagnosis.
Total costs for the visit have been
estimated at $17,000, which doesn't
include travel and accommodations.
However, Jamie says that the more
complicated the case — and he can't
help but think that Colton's case will
be one of the more complicated the
clinic has faced — the more it might
cost. It's possible, he said, that costs
could rise to many tens of thousands
of dollars to find a diagnosis.
The Smiths were first connected to
the Mayo Clinic through the brother
of one of Joanne's co-workers who
is a neurologist at the hospital. She
suggested it and soon the family
began the process.
Since the family has gone public
with Colton's condition and their
hopes of finally receiving a
diagnosis at the Mayo Clinic, many
residents and well-wishers have
come forward in an effort to help the
family with the financial burden of
American healthcare.
As a result, the Smiths have set up
a special e-mail address to accept e-
mail money transfers for those
wishing to help. In addition, a
GoFundMe page has also been
created to help fund the visit.
If you wish to donate to the
Continued on page 11
This year is a celebration for Blyth.
140 years of History
and The Citizen needs your help!
We need interesting stories and photos
to publish in this special section to be published
in the July 27th paper.
If you have or know of anyone who
has a story to tell or photos to share
please contact:
info @ northhuron.on.ca
or drop off your pictures to be scanned
at either of our offices.
413 Queen St., Blyth 541 Turnberry St., Brussels
519-523-4792 519-887-9114