My name is Jamie Labonte. I'm the husband and cheerleader for Tracie Taylor.

Our story is about a rare illness, the failure of the medical system, the need for awareness by medical professionals, and Tracie's desperate need for assistance as she fights a cruel and relentless enemy in her body.

Tracie is the smartest, kindest, and bravest person I know. A former provincial collegiate basketball player, Canadian soldier, public servant with the Government of Canada, political activist, heritage preservation and communications expert, Tracie has worn many hats, but she would tell you that her favorite ones are that of wife and mother to our amazing daughter.

Approximately seven years ago, Tracie started to "trip and fall" for no apparent reason. We consulted so many experts and neurologists. Because Tracie was a bigger person, she got responses like, "Well you need to lose weight", or "you probably just have arthritis".

Well, that changed over the next six years when she lost more than 200 lbs and went from walking briskly to using a cane for support to using a walker for safety to not being able to get out of chairs unassisted, to not being able to use her walker without me [her husband] holding her by the arm, to needing a wheelchair, to using a power-assist chair, to finally not being able to even ride in a wheelchair at all. The neurologist that told her to "lose weight" has since apologized.

Tracie's symptoms worsened to include paralysis of her core muscles, weakness in her arms, painful contractions in her feet, knees, and hips, and ultimately being unable to even lie in her own bed.

Tracie's case was so rare and odd that we bounced from one neurologist to the next, each one taking a look at Tracie's symptoms and eventually and ultimately throwing up their hands and giving up on diagnosis.

Our troubles got worse and worse to the point that I have now had to stay home to care for her 24/7 instead of growing my budding paralegal law practice. Tracie still works from home, from her lift chair, where she also sleeps, takes her cloth baths, and is ultimately imprisoned. It is a major concern for me to even leave the house to collect groceries for fear of Tracie needing me. The pressure is unbearable but when you love someone, there is nothing you won't do.

Although her diagnosis is about 5 years later than it should have been, which allowed her symptoms to progress unchecked, we started to suspect the genuine case earlier this year. One night, while Tracie was in agony over the bone-aching spasms of her illness, I looked up her symptoms and found a study online which outlined her exact symptoms. I called our doctor the very next day and asked her if she thought it could be this illness and she agreed it sounded like a match. Unfortunately a general practitioner is not allowed to make such determinations which meant we had to be referred back to the neurologists who had no idea or intention of testing Tracie.

The disease that we thought it might be was called "Stiff Person Syndrome," and it was a perfect match for Tracie's symptoms. Rapid unexplained weight loss, painful bone-breaking spasms, late-onset diabetes, and the inability to get out of chairs and eventually the inability to move.

This past fall, Tracie had to be rushed to the hospital with diabetic ketoacidosis [a side effect of diabetes which is in turn related to her illness].

Tracie nearly died, but thanks to the Cornwall Community Hospital's brilliant staff and the doctors and nurses at the Ottawa Civic Hospital, Tracie not only survived an incredible crisis but was able to finally learn what was causing her leg stiffness and muscle spasms.

I personally spent all my time advising the doctors at the Civic of my suspicions and begged and pleaded with them to test Tracie for the disease I thought it was. They agreed to test Tracie with a full panel of antibody tests and determined that she had the markers for Stiff Person Syndrome.

In Tracie's version of Stiff Person Syndrome, the body produces an antibody that attacks the pancreas as well as the enzyme in the body called glutamic acid dismutase 65 (GAD 65).

If the body doesn't have enough GAD65, the body can't produce Gamma Amino Butyric Acid (GABA) which calms down the brain and nervous system. The result is that all of Tracie's muscles fire at the same time, creating stiffness, pain, and even full paralysis. This also creates intense anxiety.

Neurologists rarely encounter Stiff Person Syndrome (SPS) because it happens approximately once in one million cases. There are only a handful of such cases in Canada. As a result they don't test for the antibodies that cause it.

Not until now.

Now that Tracie's doctors have positively confirmed her rare disease, they have her on medications that mitigate but don't eliminate her symptoms. They are also treating her with intravenous Immunoglobulin infusions (IVIG) which may help to reduce her body's attack on itself.

It is our hope that Tracie will recover some if not all of her movement and independence but the truth is the doctors should have started treating her 6 years ago and it may be too late. We remain optimistic and intend to fight this disease with every ounce of our energy and spirit.

Because Tracie and I have limited ability to work, we have effectively cut our income in half and our expenses continue to mount. Tracie needs an assistive van to help her get around. These cost upwards of sixty thousand dollars. She required the construction of a ramp and medical lifts in the house. Lifts that are adequate to carry her to and from the bathroom and bed are tens of thousands of dollars. Our home's doorways need to be widened to allow her wheelchair to fit in the different rooms (bedroom and bathroom).

In short, we need financial assistance, but because SPS is so rare, no fund, telethon, or advocacy group exists to help. Tracie wants to continue working because she wants to contribute to society. So do I. Unfortunately, for Tracie to be eligible for funding, she would have to go on permanent disability, which would mean we cannot afford mortgage payments. In essence, Tracie is punished for working and punished for going on disability.

We would be incredibly grateful for your help to get Tracie back to health and to start advocating for others with this dreadful disease. It is our hope that we can raise awareness within the medical community so that no one else will ever have to wait seven years for a diagnosis for Stiff Person Syndrome.