Life as He Knows It – One Young Man’s Life with Neurofibromatosis

For Ethan Fleetwood, “normal” life is anything but

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By Scott Jensen
By Photojournalist Catherine Steward

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.

 

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Angie Wellborn said on Wednesday, Apr 25 at 8:50 AM

I am so glad his story is being told. He is a gem of a person, always smiling, and I was honored to assist him when I worked in the class he attended. I pray now as I always have for him and his family. Blessing Ethan! I'll see you tonight

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Anonymous said on Friday, Apr 20 at 11:07 AM

go to Amazon.com to order the book...$19.95 plus $5.95 for shipping...worth it...has information that can improve conditions and doctors like the book... when they get stuck on a condition, some look to it for ideas of what to test for...did at MSR IC Unit.

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Amanda said on Wednesday, Apr 18 at 6:45 PM

I wish I could be more hopeful as this story is. I have a friend that is going through this condition and it is hard to see someone you care about get sick all the time, seeing tumors get larger, and him getting sick with colds or the flu more often than not. Regarding this story, I hope it will help the family but as far as my friend, it is hard to see him feeling this bad each day. However, I know that he is going through much worse. My hope is not as high as this family.... forgive me........

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Anonymous said on Wednesday, Apr 18 at 10:45 AM

Rare Earths: Forbidden Cures...wonderful book..

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Chugiak Elementary Parent said on Tuesday, Apr 17 at 5:59 PM

The Eagle River Elks Lodge is presenting and Evening Extravaganza with Ethan on April 25 2012 From 6:30-8:30 @ the Chugiak Elementary School. This is a fundraising event for Ethan's Family. There will be a Live Auction. Silent Auction. Story Teller & Song Writer Eric Coe. Face Painting. Doodles & Noodles. Board Games. And tons of activities for the whole family.

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