The boy on the Facebook page is grinning. He’s an adorable 3-year-old who looks playful and happy. His name is Rayan, and he has acute lymphoblastic leukemia (ALL), a form of blood cancer.
Diagnosed in December, he did not respond to chemotherapy. Now he urgently needs a bone marrow transplant.
More important, he needs a transplant from a donor who shares his ethnicity.
While Rayan lives with his parents at Battery Park in Manhattan, a major part of the effort to find a donor has focused right here in Jersey City. Why? Rayan is of Pakistani heritage. It is better if his donor is of South Asian descent, and many South Asians (from Pakistan, India, Bangladesh, and Sri Lanka) live in Jersey City.
On Feb. 12, a drive was held at the Newport Liberty Medical Associates on Washington Boulevard in Jersey City. The medical group, which is made up largely of Indian doctors, donated the space. The drive netted 43 samples and raised $500.
“People from around the globe are asking for ways to help.” – Sohail Kahn
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Drives have taken place in Canada, Pakistan, United Arab Emirates, and the United Kingdom. In the U.S. drives have been held in Florida Georgia, Louisiana, Massachusetts, New York, Pennsylvania, Wisconsin, and a number of locations in New Jersey.
How to help
Volunteers simply go to a designated meeting spot and take a bone marrow compatibility test. The painless, 30-second procedure requires that the potential donor get a cheek swab.
Anyone between 18 and 60 can participate. While ethnicity is important, gender and blood type are not.
If you want to join a marrow drive being held across the United States, go to CureRayan.org for venues, schedules, and further information. You can also learn how to organize a drive or spread the word.
Of the 9 million people who have signed up on the U.S. registry, only 1 percent are South Asian. Caucasians have about an 80 percent chance of finding a match. Rayan has no siblings and his parents are not matches.
Donating bone marrow is not like donating an organ. It’s a simple outpatient procedure that can be as easy as donating blood. Donors generally go home the same day and feel only a slight discomfort.
Cord blood from umbilical cord banks can also be donated. Parents who want to donate cord blood should e-mail Rayan’s father directly at farhan.sher@gmail.com.
Loving friends
Sohail Khan of Chatham, N.J. is a close family friend who has been involved in the drive. The youngest of his three boys is Rayan’s age.
Last Sunday Khan was holding a drive in his home. Two recent private drives held by the Khans netted about 70 people.
In the last three or four weeks, according to Khan, there have been more than 150 drives across the country that have registered more than 5,000 people.
“We’re just a group of friends who work on Facebook,” Khan said. He credits social media with their success in getting the word out.
A couple of local agencies are involved in providing test kits and training volunteers. Another group that is helping to arrange drives is the Association of Physicians of Pakistani Descent of North America.
The data which is sent to a national data base is checked by Rayan’s doctors to see if there is a match. It takes three to four weeks to get results.
Rayan’s hope
“If a donor is found, there’s a good chance Rayan will get better,” Khan said. “But we don’t like thinking about odds.”
Helping Rayan was an easy decision for the network of family and friends who mobilized on his behalf. “It could happen to any one of us,” Khan said. “The desperation the parents had four weeks ago touched all of us.”
They are all heartened by the response. “People from around the globe are asking for ways to help,” Khan said, “and 6,000 are following Rayan on Facebook.”
Khan believes that there has “never been a grassroots drive on this scale short of someone famous being involved. It’s the first time I know of South Asians coming together across borders as a Diaspora rather than purely country based.”
The pictures of Rayan on Facebook are partly responsible for the overwhelming response. “The beautiful pictures resonate with people,” Khan said. “If he were 24, we wouldn’t have gotten the response.”
Adding to the donor database has a far-reaching effect. “We need to continue the drives,” Khan said. “Rayan is at the center but we are also trying to help future Rayans.”
In a thank you letter on Facebook Rayan’s parents, Sarah and Farhan write, “It hurts when all we want to do is hug the light of our life tightly and we can’t because he has a line in his chest … What gives us hope is when friends and family work selflessly and tirelessly to try to find that one person from millions who will bring the gift of life to our life.”
Kate Rounds can be reached at krounds@hudsonreporter.com..