What do Harrison Ford, Brendan Fraser and I have in common? Well, these two actors are starring in a new movie called Extraordinary Measures, to be released later this month. The movie is based on Pulitzer Prize-winning author Geeta Annand's book, The Cure.

It's the true story of John Crowley, who, upon discovering his two very young children were diagnosed with Pompes disease (a rare form of muscular dystrophy), sets out to find a treatment for them. The tag line for the movie is, "Don't wait for a miracle. Make one!"

Crowley, a Harvard MBA, formed a company, financed research and ultimately found a treatment for this disease. He truly made a miracle.

This is where I come in. I also have Pompes. I'll be having my first dose of John Crowley's miracle tomorrow. I have the adult onset form of this rare disease.

Since shortly after my diagnosis, I've been working to get this treatment for myself and others here in Canada. My fellow American sufferers have been receiving this treatment for years. Since suffering respiratory failure and being admitted to Credit Valley Hospital (where their miracle workers saved my life), I have fought with the Ontario Health Ministry for this treatment. Since the miracle at Credit Valley, there have been few miracles in my life.

I am tired most of the time. I wake up in the morning with no energy. Even worse, I don't look "sick." To the uninformed, there's nothing wrong with me.

The Ministry of Health has said that the delay in approval for this treatment was for them to develop a protocol. They have taken years to do this. These are years I can never get back.

This treatment will, hopefully, stop further progress of the disease.

The cost of the treatment is extreme, but much less than the e-Health fiasco. Ministry officials have not communicated with me very often. The message seems to be that, as a patient, I should know my place.

In their efforts to confound and confuse, they have also made the process patient-centered, not disease-centered. That means a person diagnosed with Pompes disease tomorrow will have to go through a struggle very similar to my own, with perhaps a slightly shorter time frame.

There's no doubt there's money at the Ministry of Health. Why is it not being spent on the patients?

I may sound cynical, but I have seen great things while waiting for this treatment. I have nothing but praise for the caring doctors and support staff I have encountered and seriously wonder how they can function with a boss like the government of Ontario. Now that's another miracle!

I get my first treatment tomorrow. I'm truly grateful for John Crowley and his miracle and I hope it works for me. I'm way too tired to make my own.

Perhaps I'll regain some energy and truly be able to engage the Health Ministry on the treatment for rare diseases issue. I'd enjoy the irony of them treating me so that I can beat up on them. Turnabout is fair play.

Guy Ashford-Smith, 52, is a longtime Mississauga resident. He was diagnosed with Pompes Disease in 2001.

http://www.mississauga.com/opinion/columns/article/249647--time-for-my-miracle