Monday, May 16, 2005
Reading this made me sad and mad. I cannot believe that someone with healthy blood who can save this little boy's life isn't going to help him. It doesn't really hurt all that much. I remember your neighbor Jackson's sister donated marrow for his transplant. She was only 5 or 6. She was incredible. I remember seeing her just after she donated. I was so proud of her. I wish that I could have done it for you or for anyone else.
I really wish I could talk to this woman, or that she could read this or the other blog.
May 16, 2005
Ailing Melbourne boy 'out of options' as family struggles to find bone marrow donor
Potential match changed mind only a week ago
BY JOHN A. TORRES
Get set to get wet. Karen Magrath of Melbourne pretends to throw her son, Ty Perkins, into the backyard pool. Ty, 11, suffers from Franconi anemia and desperately needs a bone marrow transplant.
MELBOURNE - Ty Perkins spends his days reading and dreaming of lands filled with dragons, wizards, heroes and magic -- anything but the reality of the bone marrow disease that is killing him.
The Melbourne boy is 11 years old.
What complicates things further is that Ty, being of Chinese origin, is having a rough time finding a matching bone marrow donor. "It is very difficult for African-Americans, Asians and Hispanics to find a bone marrow match because of limited people in the bank," said Dr. Richard Levine, oncologist with Space Coast Medical Associates.
Ty was diagnosed with Fanconi anemia in 1999 while living in an orphanage in Taiwan. He received no treatment because he was an orphan. The only thing that can help him now is a bone marrow transplant.
"He's out of options," said his mother, Karen Magrath.
Magrath and her husband, Steve Perkins, adopted Ty last year, knowing he was sick.
"From the second I heard about Ty, I immediately felt like he was part of the family," Magrath said while pouring freshly squeezed lemonade for the boy and his two adopted Chinese sisters. "I'm just a mom."
When Ty arrived in Florida, he knew only four English words: mommy, daddy, poo poo and disgusting. He also had no idea that he was sick.
"I feel nothing about it," he says bravely of his disease. "I only wish I could go back to school."
But in private, he has already started asking his mother about dying.
"We tell him that the doctors will do everything they can do," Magrath said, making sure the children do not see her cry. "And if he gets tired of fighting then it will be time for him to go to heaven."
Ty has read the Chinese version of every Harry Potter book -- twice. He is tackling one in English. He has also immersed himself in the Middle Earth world of "The Lord of the Rings" and the faraway galaxies of "Star Wars."
When asked who he would choose if he could be anyone of the fantastic characters, Ty shook his head no.
"I would pick any of them," he said, though one would assume an affinity for Legolas of "The Lord of the Rings," since Ty's favorite hobby is archery.
The family suffered a blow only last week when a woman in New York -- miraculously a perfect match -- backed out of donating her marrow.
The family was set to go to Sloan-Kettering Cancer Center in New York for the transplant.
"I was devastated," she said. "I don't know if it's a cultural or educational issue. It's hard to imagine where that person could be emotionally that they would decide not to save an 11-year-old boy's life."
Helen Ng, spokeswoman for the National Marrow Donor Program, said many minorities simply do not know about the procedure or the procedure's importance.
"People don't realize how it affects the community until it becomes your child," Ng said. "This is all about how ordinary people can save lives."
Charles Hayford, professor of Asian American Studies at Northwestern University, said that like many ethnic groups, the Chinese community simply needs to be educated about transplants.
"It was part of the old teaching to go to the grave intact, but then cremation came about," he said. "The idea of being cut up or having blood taken is not very attractive to anyone. If there is an educational campaign then it can become quite popular. But it won't be easy."
There is a blue baseball hat laying on the floor of Ty's room and his prize-winning science project sits in the corner as if its been discarded.
In many respects Ty is still the typical 11-year-old boy.
He loves to play "Need for Speed" on PS2 and he teases his little sister Zoe, calling her "chicken." But Ty knows he is different. He is now dependent on weekly blood transfusions. He tires quickly, loses his breath and bleeds and bruises very easily.
Ty was forced into home schooling last month when his immune system became so compromised that doctors did not want to risk him catching anything from a fellow student. Once a week, though, he receives a packet of letters or drawings from his fifth-grade classmates at Sherwood Elementary School.
"The children really took him in and love working with him," said his teacher, Debbie Mahl. "He is such a delight to have."
The boxes and suitcases packed for New York City serve as a reminder of the cancelled marrow transplant. They don't unpack them, hoping another donor will be found in time.
Ty knows it may save his life, but he doesn't like talking about the possibility of a transplant.
"I'm not sad about being sick," he said. "I'm just chicken . . . a little bit."
Contact Torres at 242-3649 or firstname.lastname@example.org