An extraordinary life: Easton Fangerow
By Denise Baran-Unland Correspondent February 3, 2013 5:18PM
Easton Fangerow
Updated: March 5, 2013 6:10AM
Tina Fangerow of Lockport recalled the day a nurse, after giving an injection to her son Easton Fangerow, became so moved she had to leave the room.
“She had tears in her eyes as she said, ‘That is the most polite 2-year-old I’ve ever seen. I just gave him a shot and he thanked me,’” Tina said. “He was very sweet, laid back and friendly. He’d hold out his arm for his blood pressure and say, ‘Thank you.’ People fell in love with him the moment they met him.”
Having metachromatic leukodystrophy meant Easton, instead of continuing to develop normally, as he had for the first two years of his life, would regress until he was in a permanent vegetative state. Children with this genetic disorder generally die by their fifth birthday.
But metachromatic leukodystrophy couldn’t stop Easton from enjoying books — especially Thomas the Tank and anything trains — his mother’s “dance parties” (where Tina would sway to children’s music as she cleaned) and Mickey Mouse. Nor did confinement to bed and a feeding tube thwart Easton’s mischievous ways.
“He often bit down on his suction tubing and block the suction with his tongue to get his humor across,” said Dedria Galik, pediatric case manager at Joliet Area Community Hospice “He would smile, make ‘fishy faces’ and follow you with his eyes.”
Second to train books was baseball. Easton’s older brother Evan, now 17, played fall baseball. Easton was 10 days old when he attended his first game; as he grew, Easton cheered and clapped to televised baseball. His father Brian often rolled a ball for Easton, who’d swat it with his Nerf bat.
“He’d crawl around in a circle like he was running the bases,” Tina said.
Easton showed no sign of this disorder until he failed to walk. His original diagnosis was cerebral palsy, but when Easton started slurring his speech and experiencing swallowing difficulties, more testing was initiated, which led to the actual diagnosis in March 2010.
A stem cell transplant might have extended Easton’s life by a year or so, but Easton’s condition had progressed too far to allow it.
“Our only option was to take him home and keep him comfortable,” Tina said.
In September 2010, Easton took a Disney cruise, courtesy of Make-a-Wish Foundation; he happily smiled throughout his private “meet and greet” with Mickey Mouse. Although Easton’s vision had faded, his love for books did not, so Tina always chose books with bright colors.
For Easton’s fourth birthday, guests brought donations of books for Joliet Area Community Hospice, 250 in all. For his fifth, it was $1,000 for the pediatric hospice Christmas party fund. Easton died the day after his last birthday party, on Aug. 19, nine days shy of his fifth birthday.
During his last year, Easton was expressionless; the smiles had vanished; he could barely turn his head; and he slept most of the time. Still, whenever a baseball game aired, Tina turned it on so Easton could hear it.
“I think, in my heart, he enjoyed it,” Tina said.
Contact Denise M. Baran-Unland at 815-467-5249 or artemis279@aol.com.
