Family desperately seeks bone marrow match for kindergartner

Matthew DeVine turned 6 recently and started kindergarten. The bright, happy child appears perfectly healthy.

But doctors at several different hospitals had a different story to tell his parents, Greg and Jennifer DeVine.

Matty, as he is known, suffers from a very rare and serious blood disorder called myelodysplastic syndrome with monosomy 7. His life is in the balance; he needs a bone-marrow transplant to save it.

Everyone in Matty's extended family on both sides has been tested, but no one was a match. So they are turning to the public for help.

"We are asking that people between the ages of 18 and 60 consider attending one of the upcoming bone marrow drives around the area to see if you can help Matty or someone else in need," said Melissa Burlini Teuscher of Arlington Heights, the child's aunt and coordinator of the drives. People who have been typed for the bone-marrow registry before will stay on the registry until their 61st birthday, or until they asked to be removed.

Testing involves a simple cotton swab of the inner cheek. Information about each person's DNA will be submitted to the largest bone marrow registry in the world. Lab tests costs $65, but donors are asked only to donate what they would like; no monetary donation is necessary.

If matched, donors will either donate marrow removed from the pelvic bone, or through stem cells taken from the blood.

"Our hope, of course, is that someone will be found to help Matty," said his mother, Jennifer Burlini DeVine, a 1986 graduate of Buffalo Grove High School and native of Arlington Heights. "But if you can't help Matty, maybe you can help someone else who is looking for a donor."

"We have asked everyone who is tested to please be serious about this because while you may not get a call about Matty, sometime in your lifetime you may get a call for someone else who is in the same situation as Matty is now," said Sue Burlini of Arlington Heights, Matty's grandmother and director of social services for Wheeling Township.

Matty's only chance for a cure is to find a bone marrow donor. Doctors have told the family that chemotherapy and radiation without a donor will not provide a cure.

MDS, as Matty's disease is known, is a group of diseases that affects the bone marrow and blood and can eventually turn into acute myelogenous leukemia.

The Glenview family's ordeal began in mid-June when Matty's pediatrician decided that several years of consistently low blood counts warranted a trip to the hematologist. A biopsy revealed the rare disease.

"We were shocked," said Teuscher. "All along when he was showing low blood counts, we thought that it was a vitamin deficiency or something else that could be easily handled. So when this diagnosis came back we were devastated."

The doctors told the DeVines that myelodysplastic syndrome with monosomy 7 is so rare in children that maybe only 100 children per year are diagnosed in this country. Usually the syndrome is seen in men over the age of 65 who have been undergoing chemotherapy for another cancer, they said.

"But Matty's is idiopathic which means his genes mutated for some reason and they don't know why," DeVine explained.

Tax-deductible gifts to help the DeVine family may be sent to Sister Paulanne's Family Fund, Our Lady of Perpetual Help Church, 1775 Grove St., Glenview, IL 60025. Checks should be marked for "MDS child."

Bone marrow registration

Several area drives are being hosted by DKMS, a non-profit group that works to get donors listed on the national marrow registry. For more information, visit dkmsamericas.org or marrow.org.

For Matthew Devine:

• 8:30 a.m.-12:30 p.m., Sunday, Sept. 7, Our Lady of Perpetual Help Church, 1123 Church St., Glenview

• 1-4 p.m., Sunday, Sept. 7, Windy City Fieldhouse, 2367 W. Logan Blvd., Chicago

• 6-9 p.m., Monday, Sept. 8, Westbrook School, 1333 Greenwood Road, Glenview

• 11 a.m.-3 p.m., Tuesday, Sept. 16, Kohl's Children's Museum, Glenview

• 10 a.m.-1 p.m., Saturday, Sept. 20, Highland Park Recreational Center, 1207 Park Avenue West, Highland Park

• 5-10 p.m., Thursday, Sept. 25, Bethel Lutheran Church, 36 N. Grant St., Westmont

For Bert Gasiewski, 21, of Inverness, who needs a bone-marrow transplant to treat leukemia. He was treated for Non-Hodgkins Lymphoma and was in remission this summer when the leukemia surfaced:

• 7:30 a.m.-3 p.m., Sunday, Sept. 28, Holy Family Parish, 2515 W. Palatine Road, Inverness