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Life as He Knows It – One Young Man’s Life with Neurofibromatosis
For Ethan Fleetwood, “normal” life is anything but
By Scott Jensen
By Photojournalist Catherine Steward


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.”

When they returned home from Chicago two weeks later, it was just the beginning.

Ethan faces six months of swelling and recovery only to go back and do it all over again.

This was the first major surgery of his young life. Likely it's the first of many.

But the one thing Ethan and his family will certainly count on: support from their community.

His friends' families already have plans for fundraisers and donations.

“Hopefully it won't grow back, but there's really no guarantee though,” Lela said.

Because of this Ethan’s childhood has a chance to shape up, but how others define "normal life" may not even matter to Ethan.

Because in his mind, life already is normal.

Now we do want to point out that cancer occurs in a very small percentage of neurofibromatosis cases.

Ethan's doctors screen him regularly for malignant tumors and so far, so good.

The other part of what makes this so difficult for Ethan’s family is the financial end.

Lela told us the medical bills from their two-week stay in Chicago total just over $100,000.

Medical insurance covered most of it, but the Fleetwoods are still on the hook for $28,000.

She says families in these kinds of situations understand the extremely high costs and deal with them. It's just a part of their lives.

We wish Ethan and his family all the best.

If you would like to consider helping out Ethan's family you can make a donation to the Key Bank account # 720153000925.

For more about Ethan visit http://ethanfleetwood.wordpress.com/neurofibromatosis.

And the Eagle River Elks Lodge #2682 presents an Evening Extravaganza with Ethan at Chugiak Elementary on April 25, 2012 from 6:30 to 8:30 p.m. Parking and admittance is free. All ages are encouraged to attend.

Activities will include:
Singer and Storyteller Eric Ode
Silent Auction
Live Outcry Auction
Board Games
Cupcake Bingo
Rock Wall Mural
Karaoke
Face-Painting
Noodle and Doodle Station

All funds collected will be passed directly on to Ethan's family. If you are interested in donating an auction item or volunteering your time please contact Jennifer Carlson at 742-3400 or carlson_jennifer@asdk12.org, or Austin Schwartz at schwartz_austin@asdk12.org.