Kaitlin Bolton Here is an occasion for you to polish up your motorcycle, join your fellow enthusiasts and have a day's ride in the wonderful countryside — all for a good cause. Read on:

Met Achromtic Leukodystrophy (MLD) is a neurochemical disease which gradually causes the myelin sheath that coats the brain to degenerate. Life expectancy after diagnosis is three to five years. Not only is there no cure, and little or no research, there is also no treatment known or offered by conventional medicine.

In other words, when a person is afflicted with MLD, conventional medicine has nothing to offer about it. However, OHIP will not pay for any alternatives; in addition, there is no financial assistance given to the family by OHIP for coping with a person with MLD if that family is seeking help in the fields of alternative medicine.

So, the family have a choice: staying with the conventional medical care — which amounts literally to nothing up to palliative care while receiving some benefits from the system in the way of financial assistance — or looking for alternatives which might in some way retard the progress of the disease or even reverse it, while getting no financial help from OHIP.

Thus it is with Orangeville's Bolton family, whose 14-yearold daughter Kaitlin, was diagnosed with MLD at the age of seven and has lived much longer already than the prognosis anticipates. The Boltons attribute her continued life to the alternative medical treatment she is receiving from Dr. Randal Thomason in Arizona.

Although Dr. Thomason contributes his time and expertise to the Boltons, they must pay for the medication Kaitlin is given intravenously at a Guelph hospital every month. OHIP does pay for the facilities and administration of the medication.

While Kaitlin's condition and her mental agility are remarkable, given her circumstances, the financial burden for the Boltons is a heavy one. Over the years, the community has contributed one way or another, but, meanwhile, the Bolton debt load is ever on the increase.

This year, the class at Parkinson Centennial Public School with whom Kaitlin should have been graduating, decided to do what they could to help her parents cope. They raised money at a Valentine's dance and then sought more help from the community.

They also wrote a letter to the local branch of the Knights of Columbus, explaining the situation and seeking assistance from them. The girl's plight caught the imagination of the Knights and they have taken up her cause with their first annual Charity Motorcycle Ride.

Here's the plan: on Sunday, September 13, participating bikers of all ages and ilk will register for $25 at The Deck Pub on Mill Street, from 8:30 to 10 a.m. There are prizes and it is a poker run, with a winning hand of $750. The ride is to support the Kaitlin Bolton Sunshine Fund and other local charities.

To find out details of the day, I paid a visit to Orangeville lawyer Stephen White, a member of the Council of the Knights of Columbus, Chair of the Charity Community and the ride's instigator. He was impressed by the horrors of the disease which, as he said, "essentially eats holes in the membrane that surrounds the brain. Kaitlin has lost her ability to walk and speak. She blinks her eyes to communicate."

He was clearly impressed with Kaitlin, whose cheerfulness and bravery affect everyone who meets her.

The idea of a motorcycle ride came to him as he watched riders, who are professional men and women otherwise, show up at The Deck pub down Mill Street from his law office, for "Show and Shine." It occurred to him that they might enjoy such an event as this charity ride.

When he put the idea to the Knights' Council, it was perhaps viewed as being a little outrageous, but this was tempered by the fact that a few members of the Council likewise enjoy country rides on their motorcycles.

Still, the day is also about the money raised.

Said Mr. White: "We have three sources of income for the day — the $25 per rider registration fee, sponsor donations that they might bring in, and corporate sponsorship."

Heading the pack in the last of these is Scotiabank, where Phil Lamanna, manager of the bank's Riddell Rd. branch, has offered to match donations up to $5,000. Coming recently to the community, Mr. Lamanna is anxious for his branch to support this kind of community event.

"At some point, you've got to give," was Mr. White's comment on his concern for Kaitlin and his determination to help her and her family. "You can give money to a charity but until you've given something of yourself, it's just talk."

Tallking with Kaitlin's mother, Susan Bolton, a few days later, gave me the crux of the story.

"Just before grade one," she said, "Kaitlin began walking funny and falling down a lot. The doctor thought it might be mechanical or something to do with her bones. When he asked her to walk with her eyes closed, she fell down."

Further tests and investigations with other doctors brought the bad news of Kaitlin's true condition.

"There is no treatment at all," Mrs. Bolton declared. "They monitor the girl's deterioration to the state of palliative care — and that's it."

When that was not good enough for the Boltons, they were on their own. Eventually, they found Randal Thomason in Arizona. He analysed her blood samples extensively and began treating her with vitamins and minerals, which are administered intravenously. Mrs. Bolton has to go to a pharmacy in Toronto to pick up the prescription and deliver it to the hospital in Guelph.

"It is keeping Kaitlin going. She is still with us. Her mental capacity is good. She remembers people and is very aware but she can't verbalise. There are only very mild improvements but she is not deteriorating."

To give some help, Mrs. Bolton's parents live in a granny flat in the house. They can watch over Kaitlin while her mother is out but they are not able to lift her.

"We face all the challenges," Mrs. Bolton told me.

She also emphasized that part of the cause of this tragic disease is pesticides in the environment. When Kaitlin's hair and blood were analyzed, the levels of pesticides were far above what could possibly be considered tolerable.

"There's a company in B.C. that wants to make pesticides with flavouring because people complain about the smell," she said. "I was asked to sign a petition to stop — and I certainly did. Imagine if pesticide smelt nice, children might lie down on the lawn to smell it," she added with disgust.

Of her own daughter, she said, "Kaitlin is always very happy — she is laughing and carrying on all the time."

No wonder, then, that Dr. Thomason says he has "fallen in love" with the girl. The doctor, who has a neurochemical background, comes to Orangeville once or twice a year to monitor Kaitlin's condition at no charge to the Boltons. It is he who prescribes the vitamins and minerals that are given to Kaitlin.

"This is the alternative to nothing," he pointed out. "Conventional doctors wash their hands of this because they just don't know how to treat it. They are very matterof fact about what will happen and then they turn their backs on it."

Dr. Thomason is anxious to convey that MLD is not simply a missing enzyme but a series of occurrences, a link of deficiencies all affecting each other. This is a multiple problem, not a dilemma of one aspect of the person's make up.

His aim is to try to "restart the body to restructuring enzyme production and neural efficiency." He looks on MLD, as well as other neuro degenerative conditions such as Alzheimer's, dementia, and ALS as neuro-chemical abnormalities born of autoimmune deficiencies.

The problem with these diseases is multi-dimensional and needs to be treated on many levels.

"Nutrition is at the base," he said, "from a dog eating poor kibble to a person eating bad food." To fight the diseases, "the treatment is not just drugs, we're giving building blocks."

He is fascinated by Kaitlin's condition: "Her mental faculties are way ahead of what we expected."

His treatment is a carefully thought-out blend of vitamins like vitamin C and amino acids, as well as some isolated compounds. He has patented a process of blood analyzes based on the math around alga rhythms.

He continues to alter the treatment she gets, every 10 to 12 months, so as to "keep her body involved" with the process of restoring the missing enzymes.

As for his deep interest in Kaitlin's case, he told me that in addition to having fallen in love with her, "my expertise falls in line with what is wrong with her." Indeed, he hopes to publish his research and findings in order to add credence to "alternative" ways of treating otherwise untreatable neurological diseases.

Dr. Thomason can be reached at rwt@rogue research.com.

So, here's the deal: on Sunday, September 13, there'll be a beautiful ride of 133 kilometres through some of the loveliest country in Ontario with a gang of people all there to enjoy the ride. There are prizes to be won and a jack pot at the end.

Best of all is the support the day will give to the Bolton family, who will not give up on their daughter and the brave young Kaitlin herself who still loves to laugh and can only blink to say hello.