Life as He Knows It – One Young Man’s Life with Neurofibromatosis
For Ethan Fleetwood, “normal” life is anything but
ANCHORAGE - Parents of young kids, you'll want to pay attention to this story. We're about to introduce you to a brave young man, his mother, and his friends, who love and accept him in a situation where it could be very easy for them to choose otherwise.
What they've managed serves as an example for the rest of us.
When it comes to childhood there's really nothing more typical than a six-year-old boy who has to be reminded to do the same regular tasks every day.
But then there are those parts of his life Ethan Fleetwood won't ever forget.
"His medicine,” said his mom Lela. “He gets pain medicine three times a day.”
“I just thought they were birthmarks,” Ethan’s mom said.
They began when he was just a few months old.
“He had this weird…” Lela trails off, pointing to Ethan’s shoulder. “I kept trying to wash it off – it’s like the freckling that he has on his neck.”
Ethan has neurofibromatosis. It's a genetic disorder which disrupts cell growth in a person's nervous system and causes tumors to grow.
Lela said doctors didn't tell her much back then.
“Then I went home and googled it. I wouldn't recommend that,” Lela said, laughing, “’cause then I was a little freaked out.”
But she learned it's manageable. And this life is all Ethan’s ever known.
“Usually it's little kids [who] will ask, ‘what's that?’ and they point at his neck and he'll get this disgusted look, ‘that's my tumor!’ Ooooo-kayy," she said, laughing again.
Most everyone in their lives have accepted Ethan Fleetwood.
“In my mind he's just like every other kid,” said Jennifer Carlson, his kindergarten teacher at Chugiak Elementary.
Aside from the obvious, he's different in only a few ways. It’s difficult for Ethan to take part in normal activities because tumors in his left arm have rendered it nearly useless.
But even still, Ethan does all right, and his friends know it too.
“I have to say that this class has been amazing,” Carlson said. “The compassion that this class shows towards Ethan, for being five and six and a couple of them are seven years old little kids –they have got hearts that are wiser, much wiser, beyond their years. And I’m just really, really proud to have been a part of this this year. It's just been a really beautiful experience.”
Ethan's condition worsened recently. Doctors tell the family rapidly growing tumors near his heart and along his spine are getting so big they could soon seriously threaten his health.
But there's encouragement and hope – for Ethan, hope for an abnormal life.
“As for his surgery and him leaving, we're all sending him really good energy and prayers,” Carlson said.
“He's excited,” Ethan’s mom Lela said before his operation. “He keeps asking, ‘when am I going to get my surgery?’ We'll see how he does after.”