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Woman needs marrow donor to stop devastating brain disease

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KANSAS CITY, Mo. -- Kris Omecene does daily brain work-outs on her computer. She hopes they will somehow counter an attack on her brain. The former account clerk and math whiz knew something was wrong last year.

"I was counting on my fingers instead of knowing it in my brain," said Omecene.

Testing showed destruction of white matter in the brain. Omecene has the rare genetic disease Metachromatic Leukodystrophy or MLD. Her body doesn't make an enzyme that keeps fatty substances from building up and damaging the brain. Omecene worried about how long she will be here mentally and physically for her 11-year-old son, Eddie.

"I was blown away," she said.

This month, the family was referred to doctors at a Pittsburgh hospital.

"We went with no hope and we came back with hope," said her mother, Mary Omecene.

They learned a bone marrow transplant can stop the progression of MLD by giving Omecene the enzyme she lacks. Doctors say the transplant must be completed within six months. The transplant must be done before physical symptoms such as slurred speech and tremors appear.

There is no bone marrow match in the family, so they're turning to the donor registry. Family and friends are organizing marrow donor drives.

"I'm hoping somebody comes through, and the doctors are like 'Okay, that's what she needs,'" said Omecene.

She needs the transplant soon to save her brain and her life.

Donor drives will be held:
Saturday, January 25 12 p.m. to 9 p.m. Complete Nutrition at Zona Rosa, Kansas City, MO, more information can be found at this link.

Sunday, January 26 9:30 a.m. to 12 pm St. Peter's School, 815 Meyer Blvd., Kansas City, MO
Friday, January 31 2 p.m. to 4 p.m. and 5 p.m. to 7 p.m. St. Peter's School
Friday, January 31 11 a.m. to 7 p.m. Impact Fitness @ Burlington Creek, 6120 NW 63rd Terrace, Kansas City, MO

If you are between the ages of 18 and 55, you can register by having your cheek swabbed at the drives. The family encourages people who are already on the donor registry to update their contact information so they can be located if they are a match, click on this link for more information.

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