How can a young mother gaze into the trusting brown eyes of her 3-year-old son and smile reassuringly—knowing their time together is tenuous at best? That is Mindy Coleman's daily dilemma.
Mindy and her husband Daniel Coleman are a creative, young couple living in Huntersville, North Carolina. He works in advertising. She makes leather baby moccasins in honor of her Native American heritage, and sells them on Etsy.
In 2011, the combination of their genes produced Isaac, a fragile and pensive-eyed son who inherited a rare disorder: Fanconi's anemia (FA). It's a graceful phrase for a life-threatening blood disease.
The Colemans live a different reality from their millennial friends who still have the option of gliding through life. As Mindy put it, "This journey is one we didn't expect." In fact, it was the worst thing they could imagine.
And yet, says Mindy, "There is a bitter sweetness to life, a beautiful kind of joy deep down in my bones that wasn't there before." Before Isaac.
Fanconi's anemia affects many systems of the body. Patients can develop leukemia, bone marrow failure, tumors and other serious conditions. The average patient lives to be 25 and there are only about 1,000 documented cases of the disease in medical literature.
Isaac faces a multitude of medical complications: kidney failure, missing bones and thumbs, severe hearing loss, hydrocephalus, small stature and heart abnormalities to name a few.
About 5 months into the pregnancy, when many expectant couples are choosing names and nursery colors, Mindy and Daniel began preparing for the worst. Mindy's ultrasound showed swelling on the baby's brain and doctors were unsure of his condition.
When Isaac was born on October 3, 2011, he weighed a little over 3 pounds. Soon after birth, he underwent several surgeries for a brain shunt and a colostomy – the first of many. "We've lost count of his surgeries," said Mindy. He is now under the care of 12 doctors.
Today, Isaac is a handsome, dark-haired 3-year-old who weighs just 14 pounds—the average weight of a 3-month-old boy. He is tiny in stature, but big on attitude. He wears a hearing aid, walks with assistance, and now has a thumb, thanks to surgery. Music, kites and his new preschool enthrall him. He sneaks food he doesn't like to his dog, Maggie.
Isaac's parents know what his future holds. He could experience complete bone marrow failure at any time. When that happens, Isaac will need a bone marrow transplant to survive. According to the Fanconi Anemia Research Fund, most FA patients experience complete bone marrow failure between the ages of 3 and 12, so Isaac's clock is ticking.
During the past year, Isaac's platelet quality has declined significantly—a precursor to bone marrow failure. The Colemans hope they can find a marrow donor in time through the Be The Match Registry®, the world's largest and most diverse marrow donor registry.
But finding a close match will be difficult because of Isaac's partial Native American heritage: fewer donors represent that genetic population. Patients are most likely to match someone of their own race or ethnicity, and a genetically close match will greatly improve Isaac's chances for a successful transplant. So far, search results haven't been encouraging.
In spite of the heart-wrenching worry, Mindy is inspired by several children she knows who are doing well after bone marrow transplants. "Be The Match is doing all it can to get more donors—we're incredibly hopeful," she says.
Meanwhile, they will wait, and hope and love their little boy with the pensive brown eyes. Isaac, a name that means "he laughs."