Health

He's Beaten All The Odds, But Now He Needs An Unapproved Medication To Save His Life

Kyle Humphrey is no ordinary person. He's been through more in his 28 years of life than most of us could even imagine.

Since birth, Kyle has been struck with more medical issues than most people will see in their lifetime. But for Kyle? Well, that's just another day.

But now Kyle is facing a medical setback that will take a lot to treat, and since the medication is so new, his insurance won't cover it.

Shared got in touch with Kyle and his mom, Helene, to learn more about his struggles and how he manages to stay so positive.  

"People say I am different, some say it is because I have such a positive outlook on life, I say they are right," Kyle tells Shared.

Early Life

When Kyle was born, doctors saw he had Spina Bifida (his spine outside of his back.) He also was suffering from Hydrocephalus (too much water on the brain). Helene wasn't able to hold her first born right away, and instead was handed a Polaroid picture.

Right from the beginning, Helene says Kyle was a fighter.

"He had 3 operations within 24 hours of being born. NO PROBLEM he was a tough cookie!" she recalls. "By the time he was one and a half years old he had had multiple brain surgeries, stomach surgeries, spine surgeries, and surgery on one of his hips and was in a body cast from ankles to armpits for 6 full weeks at one and a half. Then a resident broke his fragile leg leading to another cast for another 6 weeks."

Helene was told her son would never be able to sit up, never be able to walk, and would have severe mental problems. But Helene had already taught Kyle an important lesson: there's no such thing as can't.

Humphrey Family

"The only mental problem the doctors could find was that he wouldn't listen to them," Helene writes. "But he did teach them a few things. He taught them what he could do!"

Kyle walked down the aisle to give his mother away at her wedding, proving that he was willing to do whatever it takes.

When he was seven years old, Kyle was diagnosed with Arnold Chairi, which caused breathing problems, upper body weakness, and his inability to grow.

Surgery after surgery, Kyle remained positive and smiling, trying to prove all his doctors wrong. After over 100 operations on his brain, stomach, spine, and hip, Kyle kept smiling.

Kyle, and his sister Maya.Humphrey Family

Though he remained positive, there was still much more to endure.

Three Month Coma

Kyle was in a coma for three months, "after a bout with what doctors called meningitis," and his mom had an interesting way to prove to the doctors that Kyle was still with them.

Kyle is a huge fan of the Ottawa Senators, a National Hockey League team, and his mom used his love of the sport to make a point.

"My mom put the Sens game on earphones," Kyle told Shared. "Each time we would score my heart rate would go up, and when we would lose, it would fall!"

Kyle and his mom, HeleneHumphrey Family

No Such Thing As Can't

After all he's been through, Kyle still doesn't give up. He created a company called No Such Thing As Can't, where he successfully breaks down barriers and stigma for people with daily physical difficulties.

"When Kyle was two he was going to physio therapy every single day to learn to walk with different types of braces and walker and such," recalls Helene. "He hated being tied into these braces and standing frames and he would look up to mom with tears in his eyes saying mommy can’t mommy please can’t do. [I] would always say okay sweetheart but you can for 5 more minutes, then when he was old enough to print [I] would print the word 'can’t' each time he would say it and hand him the paper and an eraser and say you know what you can do with that can’t, he would erase the T and say with a huge surprise on his own face, 'oh Mommy I CAN.' And for the rest of his life he would tell others that there is no such thing as can’t and he never forgot it. He lives it every day."

Humphrey Family

"Kyle does public speaking to kids in schools, with his first line always breaking the ice “ I know, I know when you look at me you see someone that is pretty different than the rest of you... I have red hair!!!" Which usually makes the crowd laugh and lightens the mood," says Helene. "But the truth is we all have differences and one of Kyle's other mantras is that he is differently abled, not disabled, "as disabled suggests that I can’t do something". Kyle has mentored many people, he is always there for people in need, he has had two people say that prior to talking with Kyle they had contemplated taking their own lives, but he put a huge spin on their perspective."

Wall Rappelling

Humphrey Family

"Every year for the last 4 years Kyle has rappelled down a high-rise downtown building for Easter Seals Children," Helene tells Shared. "Why? That is easy, when Kyle was born he had two parents walk in the hospital to have him and when his "donor" left at 11 days old it was just he and his mom to take on the world.  And that they did, they did it with the help of The Easter Seal Society, when Kyle was faced with a barrier, the Easter Seals Society was the biggest part of tearing the barriers right down. They helped purchase his first walking braces, and his second as he grew, they bought his walker and had a special desk made to accommodate his wheelchair, they sent him to an Easter Seals Camp where they asked what his one wish would be, and he said “ I want to be able to climb a tree” Well he did, they got a harness and pulled him to the highest branch! And now every year he rappels down that wall to show people that when they look at a person in a wheelchair to not see what that person can’t do, but what they CAN do."

However, this is potentially the last year Kyle can rappel down the building, as yet another medical struggle has hit.

MS Diagnosis

Humphrey Family

"He has been diagnosed with a rare type of Multiple Sclerosis called Primary Progressive," reveals Helene. "The doctor said it is like being told you have stage 4 cancer, there is no cure but you can slow down the progress of the disease with a medication that will NOT cure him, there is no cure. The cost is not covered by the government, it is $65,000 a year."

"There is a medication called Ocrevus (ocrelizumab) and it works on your immune system so that it may not attack your nervous system. This is the only medication that can do anything for Primary Progressive MS and it is coming to Canada but the cost is $65,000 for a year of treatment," says Kyle.

When asked why the government won't cover it, the family was left somewhat in the dark.

"I don’t know why but the answer I got was that you will have to go to your personal insurance," Kyle says. "But it is too new to have been approved on any insurance yet, it actually has not even been approved in Canada yet."

GoFundMe

The family has started a GoFundMe page to try and raise the money to help Kyle get the treatment he needs.

"I know that if anyone deserves a chance to keep going it is Kyle," says Helene.

"My mom does not have a medical degree from school but she sure has a medical degree in Kyle Humphrey and has instructed doctors on more than one occasion on how to save me and guess what? I am still here," says Kyle. "So when you hear people say my other half, she truly is my other half and she helps me through this horrific pain I am now suffering every day. She will fight for every breath I take."

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For now, though, Kyle has one mission: to spread his positive attitude across the nation.

"I was not supposed to sit up! I did! I was not supposed to walk! I did! I was not supposed to have been able to go to a regular school! I graduated college! I was not supposed to be able to work! I have held many jobs. I have learned in life that you CAN do anything you set your mind to, you might have to do it differently but you can do it!"