Bone marrow drive looks to even long odds for minorities

The clock is ticking for Filipe Aguilera.

The 2-year-old is afflicted with Fanconi anemia, an inherited blood disease that leads to bone marrow failure.

Filipe's only hope is a marrow transplant that doctors say should be done by July, if a matching donor is found.

So far, none of Filipe's siblings, cousins, uncles, aunts, grandparents and other family members living in the United States have matched, said his mother, Nancy Valverde, 22, of Aurora.

Valverde and nearly a dozen suburban families from Aurora to Buffalo Grove are pinning their hopes on a bone marrow drive to be hosted Thursday by the city of Waukegan.

What sets this drive apart is it aims to dramatically increase donors within various minority and ethnic communities. For minorities, a huge hurdle to finding a donor is they are underrepresented in the National Marrow Donor Program registry.

The drive is open to anyone interested in becoming a donor regardless of race.

The suburban families needing marrow transplants represent multiple races, including black, Hispanic, Asian and white, as well as mixed races.

Race matters here because tissue types are inherited and the chance of finding a tissue match is greater within one's own racial or ethnic group.

Valverde began searching for a matching donor from within the Latino community last summer, organizing bone marrow drives in the suburbs and Chicago.

"We had found donors for other people during our drives, but not for mine," Valverde said. "I feel really, really happy for those families. I have hope and a lot of faith that we're going to find one."

Of the national registry's 6 million U.S. donors, Hispanics make up 580,000, blacks come in second at 480,000, Asians, Native Hawaiians and Pacific Islanders are at 425,000, and American Indians make up 75,000, as of September 2006.

Organizers say the goal of this drive is to even the playing field for minorities, and reduce that disparity.

"(For minorities), there is always a crisis," said Julie Santos, bone marrow representative for LifeSource blood bank and the National Marrow Donor Program. "It's a one in a million chance that you can find somebody compatible. It's like winning the lottery."

To help change that, LifeSource is paying for any minority who wants to be screened at Thursday's drive, and the city of Waukegan is picking up the tab for anyone else who wants to be tested and registered, Santos said.

All interested donors who walk through Waukegan city hall's doors that day will be tested for free. LifeSource would normally charge $80 to test someone.

"We will not turn away anyone," said Diane Hewitt, bone marrow drive chairwoman and a Waukegan city employee. "It is not specifically for minorities. We have too many people that are on these waiting lists, and there are matches out there. We just haven't found them."

Several Lake County children, including a few from Waukegan, are also waiting to find matching donors.

Organizers say this is the first time a city has sponsored such an event and helped pay for it. Waukegan earmarked up to $5,000 to cover costs.

"The (city) council didn't hesitate one bit in voting for it," Waukegan Mayor Richard Hyde said. "Who cares where they are from? We want to help them in any way we possibly can."

Interested donors need not be only from Lake County. The drive is expected to draw people from throughout the Northwest suburbs.

"Anywhere in the state, if they want to come, this is a blessing to these families," Santos said.

Among those waiting is the family of Pranav Kantamneni, an 11-week-old Indian-American boy from Buffalo Grove.

Pranav suffers from Severe Combined Immune Deficiency, a failure of the immune system that leads to infections and illnesses.

He urgently needs a marrow transplant, and his best chance of finding a match is within the South Asian and Indian community.

Yet, several bone marrow drives conducted here and in other states where Pranav's extended family lives have been unsuccessful.

"We are hoping this drive will be an answer for us," said Krishna Gorrepati of Burr Ridge, Pranav's great aunt. "We are hoping kids like him will benefit a lot more by doing this."

Registry drive

A bone marrow donor registry drive is set for 8 a.m. to 8 p.m. Thursday on the first floor of Waukegan city hall, 100 N. Martin Luther King Jr. Ave.

What you need to know

The drive benefits several suburban families of various races including, black, Hispanic, Asian, mixed-race and white. For information, call (847) 650-4194.

What is it? Bone marrow transplant is a life-saving treatment for people with leukemia, lymphoma and many other diseases.

What it entails: Patients undergo chemotherapy and sometimes radiation to destroy diseased marrow. A donor's healthy blood-forming cells are added directly into the patient's bloodstream, where they can begin to function and multiply. For a patient's body to accept these healthy cells, the donor's tissue type needs to match the patient's type as closely as possible.

How to get on the National Marrow Donor Program registry: It takes a cotton swab sample of the inside of a person's cheek and filling out an application. Being on the registry is a lifelong commitment from ages 18 to 61, but a donor may request to be removed.

How donation works: If selected as a suitable patient match, you may be asked to donate bone marrow or circulating blood cells. Bone marrow donation is a surgical procedure done under general or regional anesthesia so the donor experiences no pain during the collection process. Peripheral blood cell donation involves removing a donor's blood through a sterile needle in one arm. The blood is passed through a machine that separates the cells used in transplants. The remaining blood is returned through the other arm.

For information about bone marrow donation, visit www.marrow.org.

National Marrow Donor Program