2 year old has no promise of tomorrow

1:09 PM, May 17, 2012   |    comments
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Katie Warechowski is savoring every moment she has left with her 2-year-old son Michael.

COBB COUNTY, Ga. -- Even before they arrive, we have dreams for our children.

We prepare, but there is no way to ready one's heart.

Two-year-old Michael is the adored first and only child of Katie and Mike Warechowski.

When he wasn't walking as his second birthday neared, Michael's parents took him to an orthopedist. They were told things would work themselves out.

They didn't. After a battery of tests, Katie and Mike received a diagnosis of MLD, Metachromatic Leukodystrophy.

"It is caused by the deficiency of one of the enzymes in our bodies," said Emory geneticist Dr. Suma Shankar.

The deficiency of that enzyme cannot be fixed or cured. Katie and Mike were horrified to learn that the diagnosis of MLD is a fatal one and that their little boy only has a few years left to live.

The odds in this family's story are astounding. Only 1 in 40,000 people have MLD. It's incredibly rare to carry the gene. Katie and Mike are both carriers. Of course they never knew that, never knew that their choice of each other - and their choice to grow their family - would have tragic consequences.

"It's nobody's fault," Mike said. "It's a just a chance. It's nothing we could have prevented or anything like that."

In as little as a year, 2-year-old Michael will begin to unlearn every milestone he has reached in his short life.

"He's going to lose his ability to sit up, crawl, walk, eat, swallow, see, hear and breathe eventually," Katie explained.

Katie and Mike live with this awful reality and the reality they must keep working, keep earning money to pay for their son's care as he nears the end of his life.

They own Fitness Together in Cobb County, their lives dedicated to improving the health of others.

"I still have moments of shock and disbelief like, how could this even be happening right now?" Katie said.

They cannot pack a lifetime into the next few years, so they are trying to stay in the moment with Michael, to fill each day with love that will have to carry them when he is gone.

"If I think about how I'm going to miss him then I'll walk around here sad, and then I won't get to enjoy the time that I do have with him," Katie said.

To help them make the most of that time, 11Alive's Help Desk arranged for the family to enjoy an all-expense-paid trip to Disney World from Southwest Vacations as well as family passes to Georgia Aquarium, Zoo Atlanta and LEGOLAND Discovery Center Atlanta.

If you'd like to help the Warechowskis, visit their blog.

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