Brampton resident Janet Bork and her four-year-old son Liam have embarked on a special journey together.

Liam suffers from Kawasaki Disease (KD), a rare and serious condition that impacts the heart.

The illness is associated with swelling and damage of the blood vessels or arteries that supply the heart with blood. It is the leading cause of acquired heart disease in children between the ages of two to five and can be life threatening.

At present, there is no known cause of the disease. Since being diagnosed in July 2006, Liam has become the poster boy for a major effort to raise awareness and funds in support of KD research.

The Guardian sat down with Bork, Vice President of KD Canada, in a bid to learn their story.

Q - Can you briefly describe Liam's situation? When and how did you come to know he had KD?

A - Liam was diagnosed with Kawasaki Disease (KD) in July of 2006. As a result of Kawasaki, Liam has many coronary aneurysms and is prone to blood clots. He is on four types of medication including aspirin, lipitor (typically used to reduce cholesterol) and coumidin, a blood thinner. He will be on heart medication for the rest of his life. KD is the leading cause of acquired heart disease in children. There is no known cause or cure and no specific laboratory test used for diagnosis. This is a rare disease and most children recover from KD without complications if diagnosed and treated in time with an IVIG (Intravenous immunoglobulin) treatment. Children with coronary aneurysms are faced with a lifetime of medication and increased risk of blood clots, stenosis and ischemic heart disease, increasing the risk of heart attack. These children are born with healthy hearts.

Q - You have raised quite a bit of money for this cause. How much have you raised in total?

A - In the fall of 2007, we were involved in the first fundraising effort ever in Canada with funds going directly to research at Sick Kids Hospital. The group raised $22,521 with the help of Ironman athlete Peter Johnson who participated in the Ironman Triathlon held in Florida. Quite an accomplishment considering there has been no money raised in Canada for KD.

Q - Why do you feel it is important to raise awareness of this disease?

A - It is important that people understand that the cause of this disease is unknown. It usually strikes children between ages two to five, particularly boys, but has been seen in older children. It is also important to develop a laboratory test to diagnose this disease.

Q - What has been your greatest challenge in dealing with Liam's illness?

A - I think the greatest challenge I personally faced was learning how to give Liam injections. He was on Lovenox (an anticoagulant) for a year and a half that my husband and I had to administer twice a day. I remember it being Christmas Day, opening presents and laughing and then remembering that I had to give Liam his injection. I don't think I ever got used to those painful injections.

Q - How has Liam's situation impacted your life and the lives of family members?

A - Our lives were changed forever when we found out Liam had aneurysms. I happen to know another boy who had KD in the Brampton area before Liam got it and was familiar with the possible outcome. I knew Liam's future was uncertain and we would be faced with a life of therapy, tests, angiograms and regular medical follow-ups. What I used to know to be a normal life is no longer and we had to adapt as a family and make a new norm. I feel like I have to be a supermom to protect Liam from daily bumps and scrapes, which could lead to complications. Something I took for granted before KD. Liam will never be able to participate in contact sports, experience roller coasters, ski nor do any other high-risk injury activities most young people enjoy participating in. As a mother of two active boys it is a challenge trying to explain why one can participate in a sport and the other has to stay on the sidelines as a spectator.

Q - What is the most striking aspect of this disease?

A - The most difficult thing to accept is that my son suffers from a life-threatening illness. Liam loves swimming and water and we recently went with the Children's Wish Foundation to Atlantis in the Bahamas so Liam could see the ocean. Knowing that he met the requirements for a "wish" trip was hard to take.

Q - Does Liam have to travel far to receive treatment? Or can he access treatment locally?

A - We travel to Sick Kids in Toronto on a regular basis. His blood needs to be tested every four weeks and he requires an echocardiogram and electrocardiogram (ECG) every three to six months. Due to Liam's complicated situation we can't get treatment in Brampton but I am grateful that we live within a close distance to Sick Kids.

Q - Where would you like to see your awareness campaign go?

A - www.kdcanada.ca is a group of concerned parents and medical professionals who came together in the fall of 2006 and started a group. There was no support in Canada when Liam was diagnosed. I am now the Vice President of KD Canada. Being so involved with the group has been my therapy. The organization is still in its infancy and therefore specific goals are still in discussion stages.