Days after celebrating Easter with family, Scribner residents Brandy and Abdoul Dabo noticed that something was “off” with their 5-year-old son, Zain.
Seemingly overnight, he began to have trouble walking, he couldn’t swallow food, and his speech became slurred.
“Brandy took him to the doctor and the doctor said, ‘this is more than we can handle. You need to go straight to Children’s (Nebraska),’” said Brandy’s aunt, Judy Faketty.
At Children’s Nebraska in Omaha, Zain underwent an MRI, the results of which were troubling.
“They said that he had a huge tumor and it was inoperable,” Faketty said. But because Zain was restless, they didn’t get the best image and had to repeat the test.
The Sunday after Easter, April 7, Zain underwent a second MRI, this time under sedation so he wouldn’t squirm around. This time, with a clear scan, the results were unthinkable.
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“They said not only is it inoperable, it’s incurable,” Faketty said. “And by Sunday night, (Zain) had no use of his legs or his right arm, and they had to puree his food. He was having a hard time swallowing, and his speech was, you couldn’t understand him at all.”
Zain was diagnosed with an aggressive and rare form of childhood cancer called diffuse intrinsic pontine glioma, or DIPG, which is a tumor found near the brainstem. It almost exclusively affects children between ages 4 and 8.
The tumor presses on the nerves that affect eye movement, speech, swallowing, balance and facial muscles, causing weakness in extremities and increased pressure in the skull, possibly leading to nausea and vomiting, according to the National Cancer Institute.
Most children, once diagnosed with DIPG, have a life expectancy of less than one year.
“In the matter of a weekend, (Zain) went from a preschooler to a patient,” Faketty said.
Zain doesn’t fully comprehend what’s going on, though Faketty said he’s starting to suspect something is wrong. His sister, Ayisha, born 10 months after him, “doesn’t have a clue what’s going on.”
“Zain kind of wonders why he’s not in preschool, and he kind of catches on, like when he hears something about a doctor’s appointment,” Faketty said. “He doesn’t want to talk about it. He gets kind of mad.”
Faketty said her niece is trying to remain upbeat around Zain, but it’s hard.
“Brandy is trying to just keep it together in front of Zain, because he doesn’t deserve sad days,” Faketty said. “Behind closed doors, it’s hard, you know? It’s horrible. He’s 5 years old.”
Faketty organized a GoFundMe campaign to raise funds for Zain’s treatment. Brandy, who provides support to individuals with developmental and intellectual disabilities, hasn’t been working. Abdoul is a respiratory therapist.
The family is hopeful that Zain will be able to take part in some clinical trials over the next couple of months — one with radiation, the other with chemotherapy — that will, if nothing else, make him more comfortable.
“His prognosis is still six to 12 months with or without the trials,” Faketty said. “But hopefully they better his quality of life during the six to 12 months.”
Donations can be sent to the Zain Dabo Fund at Scribner Bank, PO Box K.
For updates about Zain’s condition, search for “Zain’s Stage 4 DIPG Journey“ on Facebook.
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