Native Teen Needs Hard to Find Bone Marrow Donor from David Grewe on Vimeo.
Native Teen Needs Hard to Find Bone Marrow Donor
by Doug George-Kanentiio
Taylor Matt was an energetic teenager who had endured chemotherapy at age 12 and was entering her senior year at Cazenovia High School where she planned to carry on playing field lacrosse while studying hard for college and perhaps becoming a nurse like her mom Debra. She was also a role model for her younger sister Jessie and much admired student to her many friends.
Taylor's dad, Jeffrey, is a carpenter who coaches lacrosse, a game with deep roots within the Onondaga Nation. Jeffrey has played the game with his Onondaga relatives and took pride in Taylor's skills on a defense, a position which requires a high degree of proficiency with the stick and a willingness to get tough before the goal.
Taylor was diagnosed with Acute Myelogenous Leukemia (AML) one of several forms of the disease and unusual since it normally effects older people. It is marked by fatigue, swelling of the gums, anemia, bleeding, bruising and shallow, labored breathing. The white blood cells explode in number and consume the red, leaving the body prone to infections. Chemotherapy works in most cases, as it did for Taylor five years ago. The doctors were successful in restoring Taylor's health and were optimistic that after five years she would be liberated from the cancer.
Last August, while working at the New York State Fair, Taylor collapsed. When she was examined at the hospital the doctors found that the leukemia had returned. Since then Taylor has been in the Golisano Children's wing at the State University of New York Upstate Medical University in Syracuse,NY but now she must have a bone marrow donor is she is to survive.
There are over 7,000,000 people registered as bone marrow donors which, under normal circumstances, would be good news for Taylor since she is young and athletic. But Taylor comes from a family which has not only Onondaga but German and Irish roots which makes the donor process more complicated. She has been told she needs a Native American donor ( or one of mixed Caucasian-Native ancestry) exclusiveof her immediate family. Since less than 2% of all donors are Native the chances of locating that perfect match is difficult.
Natives have not had much success battling leukemia. Not only do most reservation dwelling Natives have limited access to health services but only 20% of those who need bone marrow transplants actually find a matching donor.
This is further qualified by the high rates of diabetes among most Natives since diabetics who take insulin are excluded from becoming donors as are those over 60 years of age or anyone who has had cancer, heart disease or HIV. Non-insulin taking diabetics, or those with pre-diabetes, may join.
This did not deter Taylor's family, friends and community from initiating bone marrow donor drives throughout the region. Clinics were held at Onondaga and Oneida territories in which hundreds signed up for the initial test which consists of four swabs of the inner cheek and, once the questionnaire has been completed, takes less than 10 minutes for the entire process.
Donor drives are planned for other Iroquois communities with the assistance of the Wiliam G. Pomeroy Foundation, a central New York organization whose president is a leukemia survivor. The Foundation has enlisted the help of Joanne Shenandoah, the GRAMMY winning Oneida performer, to spread the word through a series of radio and television commercials to be disseminated throughout the northeast.
Meanwhile, Taylor has been able to go home for short periods, to be with her high school class. She will not be playing with her club team for the Ethix league or wearing the Cazenovia High School uniform this season but as aggressive as she was on defense she will be with leukemia. She is grateful for those who have tested to become possible donors and is optimistic that somewhere in Native country there is the perfect match.
For more information about leukemia or to arrange a donor drive contact: www.giftoflifeonline.org ; or call Paula Miller at the William Pomeroy Foundation at 315-476-300 ext.2576.
Doug George-Kanentiio is the former editor of Akwesasne Notes, was a member of the National Museum of the American Indian Board of Trustees and is the author of "Iroquois on Fire". He resides in Oneida Castle with his wife Joanne Shenandoah.
