Mundelein girl with rare disease raises funds

An old guitar with just three strings brought in 25 cents at Rebecca Ackerman's garage sale. But that quarter, along with change and bills collected from the sale of stuffed animals, doll house furniture and books from Rebecca's room as well as items donated by friends and family helped the 12-year-old Mundelein girl raise $500 for Children's Memorial Hospital.

The Chicago pediatric hospital holds as dear a place in Rebecca's heart as her cuddly toys. Since being diagnosed in 2004 with basal encephalocele, a rare neural tube defect, Rebecca has undergone several surgeries at the hospital where doctors have attempted to put brain tissue that during fetal development seeped out of her skull into the sinuses and palate area of her mouth back in its place and prevent spinal fluid from leaking from her nose.

“We spend a ton of time at Children's,” Rebecca's mother, Michele, said of the hospital.

Michele Ackerman said Rebecca came up with the idea of a fundraising garage sale to fulfill the community service preparation for her bat mitzvah.

“I'm just happy with anything I raise that will help the hospital,” Rebecca said, who is also on the hospital's children's advisory board.

As the sale continued Saturday despite flooded roadways and damaging rains, Rebecca, fighting strep throat, said she was exhausted but enjoyed sharing her story with bargain hunters and hearing their stories in return.

“She takes everything like a champion,” Michele Ackerman said.

Michele said Rebecca's relationship with Children's Memorial Hospital is not over.

“She will probably have another brain surgery,” Ackerman said, explaining that the tissue will never go back but additional surgeries will prevent further seepage and infection. She said 10 to 12 children are born with this type of defect each year.

“There is no prognosis,” she said. “There is no one else for us to use as a guide.”