CTV Ottawa Published Tuesday, October 14, 2014 4:36PM EDT Last Updated Tuesday, October 14, 2014 7:25PM EDT

Fourteen months ago, Mike Berry thought he had it all. He and his wife, Christine, has just welcomed their first child into the world.

Now Berry is wondering how much time he has left with his young son, Troy.

Starting about a year and a half ago, the 42-year-old Kingston native began noticing a shortness of breath. Eventually, he was diagnosed with systemic scleroderma.

The rare auto-immune disease is causing his body to produce too much collagen, essentially scarring and eating away at his internal organs. Hardest hit are his lungs which have developed an equally-rare secondary disease. He has now lost almost 60% of his lung capacity and has trouble walking up a flight of stairs.

It is life-threatening. People with symptoms of this severity can have a handful of years to live. In Mike Berry's case the onset has been particularly fast. "It's very aggressive and even surprising the doctors," he says.

There is no cure.

But there is hope. At Northwestern University in Chicago, Dr. Richard Burt has pioneered a stem cell therapy called Hematopoietic Stem Cell Transplant (HSCT). The patient's stem cells are harvested. Then the existing immune system is wiped out. The stem cells are then used to "reset" the immune system, hopefully disease-free, essentially halting the scleroderma in its tracks. Some patients have even experienced partial recovery of their lung function. The success rate is around 70%.

The catch is that it is expensive. The treatment alone costs $150,000 U.S. Transportation, lodgings, food, etc. is over and above that.

Treating scleroderma with HSCT is still considered experimental. It is not available or even approved in Canada. In previous cases, O.H.I.P. has declined to cover the out-of-country medical costs.

Link:
Kingston man hoping for a life-saving stem cell transplant in U.S.