INFO 4 YOUR LIFE
Sherry Demeterco: 11-year-old Szymon Cajmer is living with a rare genetic disorder known as MPS II or Hunter Syndrome and his family is in a race against time to gain access to a potentially life-saving enzyme replacement drug therapy.
Justyna Cajmer: Since Szymon was six-months-old I knew that something was not right. It took us three-and-a-half years of searching until we found out when he was four-years-old and we were being told that he has Hunter Syndrome MPS II which is a devastating progressive fatal disease.
The whole body is being affected. All the major organs, the heart, the spleen, the liver, the lungs, the bones, the joints, joints are stiff and contracted. He lost his hearing three years ago. Every cell in his body is being affected by the progression of the disease. There was help available. This is our hope, it's Elaprase, it's an enzyme replacement therapy. It's available in Canada, Ontario. It's available in Alberta and British Columbia.
Sherry Demeterco: Currently Ontario's drug plan refuses to cover the cost for this enzyme replacement therapy known as Elaprase for Syzmon and four or five other children. It is however funded in DC and Alberta and in countries throughout the world.
Justyna Cajmer: If we don't get the funding for Elaprase in Ontario, does it mean that we'll have to move outside of Ontario? It's going to be difficult. Do we have to leave our roots that we already had planted in Ontario? We invested so many years and so much effort to establish our life, our friendships, the community.
Sherry Demeterco: Kirsten Harkins is the Executive Director of the Canadian MPS society.
Kirsten Harkins: We were thrilled when a little boy here in DC was able to begin treatment before Health Canada approval.
Sherry Demeterco: Hunter syndrome is extremely rare affecting probably fewer than ten people in Ontario. It occurs when the body lacks the enzyme necessary to break-down certain protein molecules leaving a person at risk for organ damage, respiratory distress, and a vastly shortened life-span.
For more information about Hunter Syndrome and treatment options speak with your doctor and check out the website mpssociety.ca.
Sherry Demeterco reporting.
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