Smiths to travel to Mayo Clinic looking for answers - July 13, 2017
BY SHAWN LOUGHLIN
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 April 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 siblings 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 by the time a diagnosis is made.
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 posted.
If you wish to donate to the Smiths, you can send an e-transfer to firstname.lastname@example.org or search for Colton’s Medical Fund: Mayo Clinic on gofundme.com.
Jamie, who has been a member of the Blyth Lions Club for a number of years, says that the family has also set up a special bank account for all of the donated funds in an effort to be as transparent as possible. He said the family wants people to know where the money they’re donating is going and what it’s being used for.
In addition, he said that if more money is donated than is needed for Colton’s fight to diagnose his condition, any remaining funds will be donated back into the community, perhaps to the Lions Club to be re-distributed to community initiatives, causes and projects.
The family is due at the Mayo Clinic in Minnesota on Aug. 7. Look for future issues of The Citizen to follow their journey, or if Colton receives a diagnosis, listen carefully for cheers of joy from Joanne that week, as she anticipates those in Blyth will be able to hear her all the way from Minnesota.