It’s been a long journey for Gavin White and his family.

Last year at this time, Gavin was in a Hamilton hospital, struggling to breathe. He was paralyzed from the neck down, and on a ventilator.

This from the young man who held down a part-time job at McDonald’s in Elmira, attended high school in Guelph, played hockey, and lived the active life of a teenager.

Gavin had Guillain-Barré syndrome, a rare autoimmune disorder in which the immune system goes haywire, and attacks the nervous system.

Only one in 100,000 people ever get this illness, and few become as ill as Gavin.

Now, Gavin is living a life much more typical of an average 17-year-old boy — using his rural home between Elmira and Elora as a “pit stop,” according to his father Tim — and getting back into his routine.

What is far from typical is his regular need for physical and occupational therapy, to regain the motor skills and strength he lost to the disease.

He also is preparing to be one of the lucky few to carry the Olympic torch in this year’s torch relay to Vancouver.

While last year at this time, he couldn’t even lift his legs, he is now able to do a slow jog.

It’s definitely time to celebrate in the White household.

It all started last summer, when Gavin started noticing a few strange symptoms.

He fell off his bike a few times. He then noticed numb patches on his skin, and his fingers would start to curl in — he was unable to open them completely.

His legs would give out suddenly, and he would lose his balance.

He thought he had pinched a nerve in his back when he fell off the bike, but as his symptoms worsened, his family became more and more concerned.

It also became more difficult for Gavin to do his job at McDonald’s.

“It slowly got hard to lift things, and I was out of breath all the time,” said Gavin.

After one particularly hard shift, he told his mother that he thought he should go to the hospital.

They called Telehealth, and were advised to go to the hospital as soon as possible.

Gavin went to Groves Memorial Hospital in Fergus, and had a bunch of blood tests done.

At this point, Gavin had no reflexes, and found it hard to walk a straight line.

He was referred to a pediatrician in Guelph, who did the same tests and added a couple more, including an x-ray of his back, and a CT scan.

By this point, it was the first week of September, and Gavin and his family still had no diagnosis. Yet, his condition was steadily deteriorating.

An MRI was ordered, but Gavin was told he would have to wait until Oct. 27 to get it.

But by Sept. 17, when Gavin fell several times in a technician’s office while getting more tests done, the family made a decision — they went to McMaster Hospital in Hamilton, a hospital that specializes in neurological problems.

“Gavin walked in, but it wasn’t long before he was in a wheelchair,” recounts Brenda.

Tim remembers answering a frightening array of questions about whether the family had any history of AIDS, multiple sclerosis, and other horrible illnesses.

And all the same tests were ordered again, because McMaster didn’t have access to Gavin’s files in Guelph.

In the meantime, Gavin’s siblings — Logan, 15, Tristen, 13, and Tyler, 27 — were holding down the fort at home, with Tyler taking on many additional duties as the older brother.

Tyler took over Tim’s plumbing business, working full-time hours during the day, and caring for his younger siblings at night.

He recalls arriving home on a regular basis, to find that someone had dropped off groceries at their home.

This was typical of the family’s experience throughout their ordeal.

“We’d get phone calls from people we didn’t know, telling us how they recovered from Guillain-Barré,” said Tim. “We’d hear from Mount Forest, Owen Sound, hundreds of miles away.”

Friends would come over and help clean the Whites’ house, or bring over cooked meals for the boys to enjoy.

And community fundraisers, with everything from a McGavin Day at the Elmira McDonald’s, to a community dance, were held to help support the family, who had many additional expenses as a result of Gavin’s illness.

For Tyler, the extra help made all the difference.

“I’d start (my day) at 6 a.m. and end at 9 p.m.,” said Tyler. “They were long days.”

What made it even harder, however, was how worried everyone was about Gavin, said Tyler.

“Leading up to Gavin getting diagnosed, it was very frightening,” said Tyler. “We were all very worried about what was going on. It felt like we were the only ones who were worried.

“When he went to Hamilton, it finally seemed like they actually cared, and gave him more attention,” said Tyler.

Within 24 hours of being admitted at McMaster, the Whites had their answer. It was Guillain-Barré.

“The doctors (at Hamilton) were really, really good,” said Tim. “They took lots of time explaining things. There were lots of real caring doctors.”

The family was given literature on Guillain-Barré, a syndrome Brenda only recalls reading about when signing permission forms for the annual flu vaccine.

They were about to get an education.

In most cases, patients with Guillain-Barré make a full recovery. If the disease is caught soon enough, patients can recover fairly quickly. Most people are treated within two weeks of becoming ill. Gavin, however, was already ill for six weeks before receiving a diagnosis. As a result, it took him much longer to get well.

He also became even more ill after getting diagnosed.

After the first round of immunoglobulin therapy, Gavin’s condition started to improve, and the family became quite hopeful. They even visited the Bloorview Kids Rehab in Toronto, in hopes of transferring Gavin to the facility.

However, he soon started a fairly rapid decline, one that was extremely frightening.

It became harder for Gavin to breathe, and he suffered a collapsed lung. Gavin was put on a ventilator, and would improve for a time, but each time the breathing tube was removed, a lung would again collapse. This happened on four separate occasions.

The family finally agreed to get a tracheotomy done, so that Gavin would enjoy some stability.

Through it all, Gavin would be the strong one for the family – he would tell his parents not to worry, and kept a positive attitude throughout.

Even when he was intubated, and could not talk to his family, he was still positive — “talking with his eyes,” according to Brenda.

She said that throughout it all, Gavin only cried twice – when the pain he was experiencing became too great to bear.

The rest of the time, he was as positive as they come.

“We really learned what kind of person Gavin was,” said Tyler. “When I saw him in hospital, it was never ‘poor me.’”

“I was more worried about how everyone else was,” said Gavin. “I told them I wasn’t going to be one of the 15 per cent (who doesn’t recover.)”

“He didn’t want to be a burden,” said Brenda.

Nurses would actually fight over the chance to take care of Gavin when their shift would start, because he was such a wonderful patient.

He took that attitude with him throughout his recovery.

Once Gavin started getting better, he worked very hard at his physiotherapy, even learning the scientific names of his affected nerves, much to the physiotherapist’s surprise.

“She was able to talk to him technically,” said Brenda.

He also learned so much about Guillain-Barré, that one of his doctors said that Gavin was able to describe the syndrome better than most fourth-year medical students.

In January of this year, Gavin was transferred to Bloorview Kids Rehab in Toronto, where he began his rehabilitation in earnest.

The first day he was there, his doctor ripped out his feeding tube, telling Gavin he could eat on his own.

The tough approach was exactly what Gavin needed.

“At Hamilton, Gavin was getting babied a little bit,” said Tim. “As soon as he was at Bloorview, they took no guff from him.”

It still took Gavin a long time to be able to return to his home, finally coming back this past July – a full year after he first became ill.

While in Toronto, Gavin made the most of his time, becoming an ambassador for Bloorview, conducting tours of the facility, and speaking on behalf of Bloorview at various fundraising events.

During one such tour, when Gavin took finance minister Jim Flaherty through Bloorview, he was able to share his story with Flaherty, as well as a representative from Royal Bank.


They were so impressed, that Gavin was offered the chance to participate in the Olympic torch relay, being organized  by RBC.

He gets to carry the torch later this month, on Dec. 28, as it makes its way to Vancouver for the 2010 Olympic Winter Games.

Brenda figures she’ll have a hard time keeping the tears out of her eyes when Gavin carries the torch, under his own strength and power, as she remembers how weak he was last year.

They know a large part of Gavin’s recovery has to do with the type of person Gavin is, with an inner strength he found when the disease was at its worst.

But they also know that their survival as a family through this difficult time has a lot to do with the community they call home, and the support they received.

“We are just really overwhelmed at the support we received from the community, from the hockey people, from family, neighbours, from unknown people,” said Brenda. “Everyone was there to help us out, especially when we needed it really badly.”

“It’s not something we ever can repay,” added Tim. “But we will never forget.”