Middle Eastern donors in short supply, local community urged to get tested

LOUISVILLE — In the world of motherhood, even a scraped knee or a slight fever in a son or daughter can be a cause for concern.

So it comes as no surprise the day Michelle Preston heard from doctors that her four-year-old daughter Yasmeen Elgarmi had leukemia and the days since have constituted the most stressful times in her life.

Her troubles were compounded even more in the past week as she found out that Elgarmi, who lives just outside of Louisville, Kentucky along with her mother, is in desperate need of a bone marrow transplant sometime within the next 12 weeks in order to stave off the life-threatening cancer that’s spreading inside of her body.

Four-year-old Yasmeen Elgarmi needs a bone marrow transplant within the next 12 weeks.

While many patients in need of a transplant find a match within a week, a search of about nine million potential donors turned up just three matches for Elgarmi, with all of them coming from the Middle East. Two of the matches have refused to donate according to Preston leaving just one potential match who hasn’t yet been located.

Now, Preston is on a frantic search to find as many other matches as possible among the Middle Eastern communities of the United States before time runs out on her daughter.

“She’s extremely high-risk and she needs an adult donor as soon as possible,” Preston said about her daughter, who has Philadelphia chromosome-positive acute lymphocytic leukemia, a type of cancer so rare that she was just the 35th person diagnosed since 2006 according to Preston.

“The problem is that there aren’t very many Middle Eastern people on the registry; I think there’s about a hundred out of the nine million on the list right now in the United States.”

Preston was born in Ann Arbor as was her daughter before she moved to California with her husband Ali Ohanian, who is of Lebanese descent. Ohanian died in a motorcycle accident while she was three months pregnant, however, and she hasn’t received help from any of his family despite phone attempts to contact them.

Preston, who comes from an Armenian and Italian background, was unable to find a match among her siblings for Elgarmi and is hoping that a large amount of people of Middle Eastern descent in Michigan will get tested to see if they’re a match for her daughter.

Those who wish to help or get more information can call Renatea Waldron of the Kosair Children’s Hospital in Louisville at 502.629.7312.

The easiest way to help might be to order a home kit for testing to see if you’re a match from www.bethematch.com, however, by clicking on the “Join the Registry” tab. The initial test is simple: a quick swab of the cheek from a kit is all it takes.

Bethematch.com, home of the national registry, is a website Preston will make part of her routine as she searches for matches for Elgarmi. Recently, the site held a successful drive for bone marrow tests in Dearborn for local resident Wadad Hadous Faraj, but many more potential donors are in need to improve the odds of finding matches.

Once a match is found for Elgarmi, the prospective donor will be contacted and asked if they would like to donate. Donors can remain anonymous if they wish as well.

 If the answer from a matching prospective donor is yes, Preston’s insurance company will pay to fly the person out to a medical center for further tests in California, Minnesota, or Michigan; Preston is still searching for a location.

The final procedure requires a pair of small punctures in the lower back and the pain felt afterward is akin to feeling as though you’ve “fallen on ice” after waking up according to Preston, who added that many bone marrow donors are able to go back to work the next day after they’re done donating.

With any luck, Preston and her daughter will see a match pop up on their computer screen sometime soon, a discovery that will transport them back to a state of mind they experienced earlier this year when Elgarmi took part in a promising clinical study for a new drug that many thought would be effective in treating her life-threatening disease.

But the hope provided by the drug trial in the study gave way to fear when they found out after a third round of chemotherapy that the cancer had returned.

“We had so much hope in the clinical study and then to find this out was just devastating,” Preston said.

“Everyone was telling us this is the one treatment that had shown so much promise and before it that all the kids went straight to a bone marrow transplant.”

Such a transplant is Elgarmi’s only hope now, however. Other patients including a boy from Turkey living in Kentucky are also in need of transplants for which people of Middle Eastern descent make the best matches.

Preston remains confident that people will step up to give her daughter a chance to live a full life through the gift of bone marrow.

“We knew it could happen but it’s just unbelievable the short amount of time we have and that there were no matches for bone marrow donors,” she said.

“We all hope as many people as possible will get tested so we can find a match for her here in the U.S. and we appreciate everyone’s help.”