Stefany Williams, 7, left, received a cord blood transplant in 2004, while her sister Emarie, 3, awaits a transplant hopefully this summer. Both girls were diagnosed with Myelodysplastic Syndrome.
Photo courtesy of the Williams family
Needle-free testing may boost marrow registry
The National Marrow Donor Program (NMDP) just made signing up on its registry a whole lot easier.
Officials say the number of potential marrow donors should rise with the introduction of the buccal swab as an alternative method for tissue typing. This involves swabbing the inside of the cheek rather than drawing blood.
“The NMDP began using buccal swabs in April of this year,” said Helen Ng, NMDP spokesperson. “It makes it easier for the donor to use when joining the registry. It provides increased flexibility for donors.”
Nashville will be one of the first locations in the country to use the swab during the national Thanks Mom! Marrow Donor Recruitment Drive on Mother's Day Weekend, set for Saturday, May 13, from 10 a.m. to 3 p.m. at the Hospital Hospitality House, 214 Reidhurst Ave. (behind Logan's restaurant off Elliston Place.)
More than 35,000 children and adults are diagnosed with a life-threatening blood disorder each year. For many of these patients, a stem cell transplant is the only chance for survival. But for those in need of a transplant — and with no suitable donor within their own family — the NMDP helps to locate a donor.
The buccal swab will be used in place of drawing blood from a vein or finger sticks. The cotton-tipped swab will be used to collect cheek cells from inside the mouth and has been proven reliable, fast, convenient and painless.
The local drive is in honor of Emarie Williams, 3, of Cookeville.
Her transplant will be the second that the family has faced. Her older sister, Stefany, now 7, received a successful cord blood transplant in 2004. Both girls were diagnosed with Myelodysplastic Syndrome (MDS). Transplant is the only hope for a cure.
MDS is a pre-leukemic state that is more common in adults. The marrow in these patients is usually defective and the majority of patients will go on to develop a form of leukemia called Acute Myelogenous Leukemia (AML) if a transplant is not performed.
A cord blood match was located for Stefany and she had her transplant on Nov. 17, 2004. Now the first-grader at Cane Creek Elementary School is an honor roll student.
But last year while taking her children in for physicals, Maria Williams noticed a familiar scenario — bruising, with the addition of petachiae, pin-sized sites of bleeding in the skin seen with very low platelet levels
“I looked at the folks in the pediatrician's office and asked, 'could you please check her blood for me?' It was the same as Stefany's. Her platelets came back low. We retested it, and it came back low a couple of days later.
“I admit I just freaked out at that point. I immediately called Vanderbilt crying. They were so kind and said bring her in the next day and we'll check it.
“There was a whole lot of prayer during this time,” said Williams. “In January the biopsy came back with 10 percent blasts. It still was not at a level to be called cancer, but it prompted the search for a donor for Emarie. We all just sat there shaking our heads. It was total disbelief.”
Although the NMDP has located a potential donor and has tentatively scheduled Emarie for a transplant at the end of May, Williams said the searche continues for a better match.
The Williams children are of mixed ancestry, which places them among the minority groups with a disproportionate number of donors on the national registry. Although it is possible for patients to match a donor from any racial or ethnic group, the most likely match is from someone of their own ethnicity.
Anyone between 18-60 years old, who meets the medical criteria and is committed to assisting any patient in need, can join the national registry. A short questionnaire is completed followed by a swab of cheek cells to determine tissue type to be matched against patients who need a donor. During this time, all volunteers are educated about the fact that needles will be used should additional blood samples be required if a potential recipient is located.
The registration process is simple.
“Please seriously consider becoming a donor and tell your friends, neighbors, everyone,” said Williams. “Less than 20 minutes can give my child a lifetime.”