When little Mason is happy, the whole world knows it. The toddler’s open-mouthed smile radiates joy when he dances with big sister Jiena to the songs on the family’s karaoke machine.
But Mason isn’t always so joyful. As his mother Maly explains, “Mason is fearful of lots of things.” Mason and Jiena know what it’s like to have their smiles stifled behind a hospital facemask, and to be confined to the ICU for days on end.
Both siblings are battling battle Fanconi Anemia, or FA, a rare, life-threatening genetic disorder that can develop into head and neck cancer. The side effects of Mason’s radiation treatment made it difficult for him to chew or swallow, requiring a tracheostomy tube in his neck and a gastric tube in his stomach to deliver nutrition.
Mason was diagnosed with FA even before he was born, at 31 weeks’ gestational age. Soon thereafter, doctors diagnosed Jiena with the same rare disease. Both children are desperately in need of a marrow transplant.
But because the family are of Hmong descent, it’s been difficult for them to find matching marrow donors. Explains Maly, “In the traditional Hmong culture, it is taboo to donate organs or tissue. The thinking is that if you are born sick, it means you aren’t supposed to survive. Some even believe you should just let sick children die.”
Because of these beliefs, fewer Hmong volunteer to donate marrow – and that has made the search for matching marrow donors all the more difficult. But Maly is determined not to give up.
“When I learned there were no matches for Mason and Jiena, I became involved with Be The Match, and started holding donor registry drives in the Hmong community,” said Maly. She brings Mason and Jiena to the drives to help potential donors realize that little lives are at stake.
After a year, the family happily discovered several matches for Jiena, but they are still searching for Mason.
Other toddlers are happily chomping on Cheerios and trying out their first words, but Mason will need to keep his trachea tube and gastric tube while he waits for a matching donor. Swallowing limitations restrict his speech, so Maly taught him sign language. Still, his mother says he’s quite the joker, and loves making the whole family laugh.
Jiena will turn 7 soon, and was over-the-moon excited to be a flower girl in her aunt’s wedding. She loves drawing, painting and writing stories (when she isn’t playing Power Rangers with her two brothers). But the disorder has taken a toll on her growth: she is the size of a typical 2-year-old.
In spite of their troubles, the family looks to the future with hope. They are grateful to be in this country instead of war-torn Laos, and are excited to spend Christmas with their extended family.
And although she’s busy caring for her family, Maly will continue working to educate the Hmong community about the importance of becoming a marrow donor. “We need more donors – and more contributions – to keep growing the Be The Match Registry,” she says. “Because I believe that all kids, not just mine, deserve a future.”
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