Family makes it their mission to recruit more Asian bone marrow donors

9:49 PM, Jan 1, 2013   |    comments
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BROOKLYN CENTER, Minn. -- Like other growing babies 10-month-old Mason Lee loves to eat. But instead of a bottle Mason must be fed through a tube.

"Everything gets stuck in his throat and he just ends up coughing it back up again," Maly Lee, Mason's mom, said.

Mason's health problems were apparent even before he was born. During a routine ultrasound doctors saw development that wasn't normal, according to Maly. They ordered genetic test after genetic test. After ten weeks Maly and her husband Eddie Lee finally got a phone call that changed their lives forever.

"I still remember the geneticist just calling and telling me she didn't know what it was. In her 40 years of practice she has never had anybody with a child with Fanconi Anemia," Maly said.

The rare genetic blood disorder, also known as FA for short, leads to bone marrow failure. Kids who have it are at greater risk of birth defects and cancer. The disease prevented Mason's esophagus and stomach from developing correctly. His arms and hands also developed deformities.

Nationwide 31 babies are born with FA each year, according to the Fanconi Anemia Research Fund. However, in the Lee household alone, there are two kids with FA.

After Mason was diagnosed the Lees decided to get their two other children, Jiena and Eddison test too. Jiena came back positive for FA.

"I can't tell you how many nights I must have sat up just crying. I definitely felt that this was my fault. My children didn't deserve this," Maly said.

Taking in the news was hard. Breaking it to their families was even harder, especially when the words anemia and cancer don't exist in the Hmong language.

"In their mind it meant that there was something that was wrong with the bloodline, with the pride of the heritage," Eddie said recalling the moment he told his parents about FA.

In a culture where karma plays a big role Eddie and Maly wondered if they were to blame.

"It couldn't be heredity because no one in our family had it or had signs of it. So it had to be either Maly's family or it was something that we did," Eddie said.

Their families have come to accept the disease but that's not the end of their fight. The average life expectancy of someone with FA is 29-years-old. Jiena just turned six and Mason will turn one in March. Both need bone marrow transplants for a chance to live longer and healthier lives. So far, no one, not even nationally, has been a match.

Doctors have told the Lees their greatest chance of finding a match would be someone of the same ethnic background. However, the number of Asian bone morrow donors is typically low. Maly has now made it her mission to get others to become donors and hopefully find a match for her kids and other kids just like them.

To see how you can help visit Be the Match.

To follow the Lee family's story you can visit their caringbridge site.

(Copyright 2012 by KARE. All Rights Reserved. This material may not be published, broadcast, rewritten or redistributed. )

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