2-year-old with rare disease slipping away

9:21 AM, Sep 12, 2012   |    comments
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  • Michael Warechowski IV and his dad Michael Warechowski III.
  • Immobilized by Metachromatic Leukodystrophy, 2-year-old Michael Warechowski is constantly in pain.

MARIETTA, Ga. -- Katie Warechowski is fighting to hold on. But bit by bit, her 2-year-old son Michael is slipping away.

"To not hear him talk has been the hardest part," Katie said. She leans down and kisses Michael, who is laying on his side on a huge pillow, whimpering every few seconds.

They knew it would be like this. They didn't know it would happen so quickly.

RELATED | Michael's story 

When we first met Michael Warechowski IV four short months ago, he was bubbly, talkative, and happy. He was already good at counting, he teased and laughed with his mom and dad. He announced as they walked toward a window, "It's a beautiful day."

But he could not walk unassisted, and his feet shot out at odd angles, unable to bear his weight. At 2 years old, he had just been diagnosed with MLD - Metachromatic Leukodystrophy, a rare genetic disease.

Like all parents, Katie and Mike wanted to fight, but they were never given a chance, were just handed a sentence - a few more years with their son.

RELATED | Michael's blog

Already the milestones have already been snatched away - walking, sitting, talking, laughing, eating, swallowing.

"It's hard to watch him get frustrated and get scared," Katie said.

Immobilized by MLD and constantly in pain, Michael now needs a feeding tube.

"It's just constant, whining whimpering, pretty much all day," Katie said.

She lifts his leg, which sticks out straight, unbending, a side effect of the disease. "He probably needs a higher dosage of the muscle relaxer," she said. "See he won't bend his knees and his feet. He's completely stiff. And that's painful."

The Warechowskis see experts in Pittsburgh. They talk to other parents of MLD kids, but it's hard. Doctors here haven't seen it - only a few hundred people in the country have it, and it makes an already devastating reality more isolating.

"I feel very alone," Katie said.

So they do what they can.

Dad Michael Warechowski III picks up his son and lays him on his chest. The whimpering stops.

"It comforts him, just being held," Katie said. "You know when you don't feel well, you want your parents. This is all I want to do. If I could not do anything else, not go to work. I hate leaving him. I wish I could just hold him, all day.

They miss Michael -- the delight he took in his young life. They would give anything to lift this from him.

"I would take this from him times 10 if it meant that he wouldn't have to be in pain," Katie said. She looks down at her little boy. "I know you hear me baby." She kisses his face.

The cost of caring for Michael and getting him to the only experts in the country is exhorbitant.

The Chick-fil-A at Woodlawn in Marietta will be holding a spirit night to help raise money and awareness for MLD and the Warechowski family Wednesday, Sept. 12, from 5 to 8 p.m. It's located at 1201 Johnson Ferry Road in Marietta. Donation jars will remain there through the weekend. 

You can also donate directly through Michael's blog

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