Benefit slated to help Crown Point boy struggling with rare blood disease

2013-11-05T18:00:00Z 2013-11-05T20:07:34Z Benefit slated to help Crown Point boy struggling with rare blood diseaseLu Ann Franklin Times Correspondent nwitimes.com
November 05, 2013 6:00 pm  • 

Colin Aburto’s engaging smile lights up a room, even as the 9-year-old boy's life is filled with rounds of monthly blood transfusions, trips to doctors and the hope for a bone marrow transplant.

Colin, of Crown Point, who suffers from aplastic anemia, and his family know more about this rare blood disorder than many physicians.

Since Sept. 12, 2012, when he was diagnosed, the Aburto family has experienced the effects of aplastic anemia, which is destroying Colin’s bone marrow and his ability to produce red and white blood cells.

The cause of Colin’s condition isn’t known, said his mother, Danielle Aburto.

She first noticed that Colin bruised easily and was easily fatigued in the summer of 2012.

“I took him to the doctor, and he said to wait three months and come back,” said Danielle Aburto, who worked as a medical assistant until an illness led to the loss of her job.

Her own training led her to pursue further testing for her son at Christ Advocate Medical Center in Oak Lawn, Ill. Blood tests showed Colin’s white cell count was extremely low.

His bone marrow produces only 20 percent of the blood cells he needs to fight infection and maintain his health. Without those blood cells, the survival rate is very low, his mother said.

Colin needs a bone marrow transplant, but his ethnic heritage makes that more difficult, she said.

Finding bone marrow donors in the United States has proven difficult, so the family has turned to donors from Eastern Europe through Comer Children’s Hospital at the University of Chicago.

Four possible donors have been identified who have Colin’s B-positive blood type, Danielle Aburto said. Lab work will show whether these European donors have had the diseases most American children have been exposed to, including fifth disease and chickenpox. The donors’ blood will indicate if they have antibodies to these diseases.

That’s important because Colin’s own bone marrow must be destroyed first before the donor marrow can be grafted in, she said. Any natural immunity he has developed to these diseases also will be destroyed.

A bone marrow transplant is extremely expensive, she said. In addition to harvesting the bone marrow in Europe and transplanting it in Colin at Comer Children’s Hospital, the boy must be isolated in the hospital for four to 15 weeks.

For up to two years afterward, Colin can’t be around other children or the elderly and must eat no raw foods.

The couple’s insurance has denied the procedure, Danielle Aburto said.

To help raise funds for the bone marrow transplant, a Benefit for Colin is scheduled for 6 p.m. Friday and Saturday at Beatniks on Conkey, a community theater venue at 418 Conkey St., Hammond.

“The theater can only hold up to 100 people, so we have 80 tickets for each night. The tickets are $20 each,” she said. “We’re fighting for Colin. Please help us fight with him.”

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