Mikey Loses Fight For Life

Little Mikey Torres, the boy Sandpoint tried to help save from Krabbes disease, died from a common cold last week.

Mikey embarked on a risky journey in October when he went to Duke University Medical Center for a cord blood transplant. He had just turned one year old and tests showed signs of some brain damage.

Krabbes disease, which attacks the central nervous system, had rendered Mikey’s hands useless and stiffened his body like a rigid doll.

Within days of his diagnosis with the rare disease, Mikey’s parents, Michael and Tina Torres, decided to take their son to Duke University in Raleigh, N.C., for the cord blood transplant. The transplant, it was hoped, would replace his defective blood cells with healthy cells that would reproduce and reverse the debilitating, and ultimately fatal disease.

Because of the family’s desperate financial situation, the Sandpoint community rallied to raise money for the experimental treatment. Donation jars around town raised $25,000 toward Mikey’s medical bills.

But the treatment was fraught with potential complications. To prepare Mikey’s body for the transplant, he had to undergo chemotherapy, which destroys the white blood cells that fight off infection.

“When we came here, we knew the risks, but we had to try,” Tina Torres said. “He fought a good fight. He got a virus in the end.”

The cord blood transplant was a success. Around Christmas time, Mikey had regained the use of his hands and could turn his head to follow the movement of people around his hospital room.

But two separate viruses kept after him, requiring heavy doses of medications and regular sessions on a respirator.

Mikey couldn’t shake the Adno virus, which causes cold symptoms in most people. In Mikey, it shut down his lungs.

“It just got to the point where he couldn’t breath anymore,” Tina Torres said. “If we put him on the respirator, we didn’t believe that he would ever come off. … We took him out of intensive care, and took him back to the bone marrow room. It was the hardest decision we ever made in our lives.”

Mikey’s parents and siblings were with him when he passed away Sunday at 12:37 a.m. Each family member was able to say a goodbye.

Mikey was buried in Durham, N.C., on Thursday. The family is planning to settle in the area.

Tina Torres has been asked by Dr. Joanne Kurtzberg to stay and start a support group for families of Krabbes and other leuko-dystrophy patients. Her husband, Michael Torres, has been offered a job with a Durham computer firm.

Tina Torres comforts herself with the knowledge that Mikey’s case has helped the university’s doctors understand more about the disease. He’s the first Krabbes child with any sign of brain damage to be treated with a cord blood transplant.

The fact that the transplant itself was a success bodes well for other children.

“We’re crying at the drop of a hat and we miss him desperately, and we can’t help but feel a little bit cheated, but knowing that other kids will get a chance, I can’t tell you how that feels,” Tina Torres said.

The Torres family will be in Sandpoint at the end of the month, where they will have a local memorial service for their son and thank the community for the support.

Details have yet to be arranged for the service.