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Author Topic: Electron Boy Saves The Day!!!  (Read 1646 times)
KarenInWA
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« on: May 09, 2010, 03:56:14 PM »

I DARE you to read this and watch the video w/o a box of kleenex nearby!

http://seattletimes.nwsource.com/html/localnews/2011818266_electronboy09m.html

Electron Boy's amazing power felt worldwide

Erik Martin was born with only half a working heart, and recently was diagnosed with cancer. So when the Make-A-Wish Foundation granted his wish, the 13-year-old Bellevue boy wanted the things he has never been able to do: to run fast and be powerful and help people.

By Katherine Long

Erik Martin, 13, has been riding high ever since his Make-A-Wish adventure as Electron Boy last month, which has drawn international attention. Judy Martin and her husband, Jeremy, have fostered Erik, who has a variety of health issues, since he was 6 weeks old.

Ken Christiansen, a concept designer who lives in Los Angeles, created a comic-book cover for Electron Boy.

Erik Martin helped design his Electron Boy outfit with a hand from the head draper at Seattle Children's Theatre. Erik hits the superhero pose in front of the family's Bellevue home while his foster brother, Kenny, watches.


DEAN RUTZ / THE SEATTLE TIMES



DEAN RUTZ / THE SEATTLE TIMES
"Yes I Do."

There's always plenty of action around the Martin household. Foster dad Jeremy walks Erik out to the curb, followed by Kenny.
 
Electron Boy

 Play video now
Related

Facebook | Electron Boy fan page
Local boy with cancer turns into a superhero for a day
He was born with only half a working heart and a host of other health problems that leave him exhausted most days. Last year, he was diagnosed with a rare form of cancer.

So when the Make-A-Wish Foundation offered to grant his wish, Erik Martin didn't ask to go to Disney World, or meet somebody famous. The 13-year-old Bellevue boy wanted the things he has never been able to do: to run fast, be powerful and help people.

"I wish I was a superhero," he told them.

Two weeks ago, the foundation granted that wish with an elaborately choreographed event that involved hundreds of volunteers in Bellevue and Seattle.

In the days that followed, Electron Boy's story flew around the world faster than, well, a speeding bullet on the Internet. The foundation has been swamped by people pledging money and offering to volunteer.

"The response has been absolutely unbelievable," said Jeannette Tarcha, communications director for Make-A-Wish Foundation.

Erik has admirers across the United States, from Hawaii to New York, and around the globe, including England, the Czech Republic and The Netherlands. Comic-book artists have made covers for an Electron Boy comic and are planning to draft a series just for him. He's been on several local TV shows, and his story has run in newspapers in Australia and Canada.

By week's end, his story had been viewed more than half a million times on The Seattle Times website and was the most-read story for nine days in a row. The Fans of Electron Boy" page on Facebook had more than 8,000 members.

"Hey, Electron Boy, way to go!!" one Facebook fan wrote. "My son is fighting cancer too and stories like yours are just what we need for a little extra fighting power every day!!!!"

People said the tale of Electron Boy's big wish brought tears to their eyes. But the story of Erik's life is more poignant, and more heartbreaking, than almost anyone knew.

Severe health problems

Erik Martin was born in December 1996 with a constellation of severe health problems, including a malformed heart that was missing its right atrium and ventricle and required several surgeries to fix. He had no spleen, and sensory problems made him extremely sensitive to touch. His mother was not able to care for him.


When he was 6 weeks old, Erik was placed with Judy and Jeremy Martin, a Bellevue couple who started caring for medically fragile foster children 15 years ago, after their own two children, Charlotte and Brian, grew up and left home. They have had 27 foster children over the years; most have gone back to family members or relatives, except for Erik, Kenny, 7, and Juan, 15.

The Martins fell in love with the tiny child, and often worried that someone in his extended family would come to claim him.

"He's very caring," Judy Martin said. "If he sees another person who's sad — he has so much empathy for everyone."

Because of his medical conditions, Erik is developmentally disabled. He goes to school infrequently and is often in the hospital. He can never be out of sight of an adult caregiver.

It takes Judy Martin 20 minutes each morning to mix his medications. Erik is unable to eat through his mouth, and is hooked up to a feeding tube attached to a portable machine that delivers his nutrition. (On his Make-A-Wish day, he carried the machine in a special "Electron Boy" backpack.)

Two years ago, doctors at Seattle Children's found a tumor the size of a lemon on Erik's spine. After 13 hours of delicate surgery — made more complicated because all of Erik's organs are on the wrong side of his body — they removed the cancerous tumor.

The Martins brought Erik back for regular checkups at Children's. One day last year, a test came back flagged with unusual results. Erik returned to the hospital for more tests.

A few days later, Judy Martin got a call from Children's. The cancer had returned.

"I'm so sorry, I'm so sorry," the doctor kept saying over the phone. But Judy Martin was confused. The last surgery had been successful; couldn't they do it again?

It is not that easy this time.

The cancer, a rare type called paraganglioma, has spread to at least eight different places in his body, and neither surgery nor conventional chemotherapy can stop it. (A Make-A-Wish news release incorrectly identified the type of cancer as liver cancer; one of the tumors is located in his liver.)

The tumors secrete proteins that play havoc with Erik's blood pressure and heart rate. The only way to treat them is to keep Erik alone in an isolation chamber for four or five days while a radioactive isotope is delivered to the tumor sites. But because he suffers from severe separation anxiety, doctors told the Martins that treatment would be emotionally cruel. And because of his weak heart, Erik might not survive the care.

The Martins take hope that the tumors are very slow growing. In the meantime, perhaps medical science will catch up and find another way to cure the disease.

Creating a wish

Not long after they got the cancer diagnosis, one of Erik's former nurses called the family and told them about the Make-A-Wish Foundation. Erik's doctors determined that he was strong enough to qualify for a wish, and the foundation went to work.

At the Make-A-Wish Foundation's Seattle office, Jessie Elenbaas' title is Wish Manager — "almost as good as a fairy godmother," she said. Right away, Elenbaas was captivated by Erik's wish. She spent hours collecting the little details that would make his wish come out just right.

"He wanted to be able to fly, to have big muscles, to be able to run really fast," Elenbaas said. He wanted a sidekick, and he wanted to ride in a DeLorean.

But he was also afraid of heights, and he tired easily. How could she give him all of those experiences in simple ways that would not exhaust him?

Elenbaas and volunteers Heidi Hardy and Lisa MacKay put their heads together and invented Electron Boy, a superhero who loves to help people and has lots of energy.

They called on local comic-book stores to design a logo. They asked the Seattle Children's Theatre to find a sidekick and make a costume. They went looking for other characters and got commitments from Puget Sound Energy (PSE) and the Seattle Sounders to play roles. "Everyone wanted to participate," Elenbaas said.

Rigmor Vohra, the head draper at Seattle Children's Theatre, visited Erik in the hospital. "It was totally his design," she said of his superhero outfit. "It was very specific — we had crayons, and we colored in this and that. He was just so enthusiastic and sweet."

Edgar Hansen and Jake Anderson, who star on the Discovery Channel's "Deadliest Catch," agreed to be the villains. Lightning Lad, aka local actor Rob Burgess, answered the call to be Erik's sidekick. ("I just want to make it clear — Lightning Lad is 51 years old," the good-humored Burgess warned the foundation.)

At PSE's Bellevue headquarters, employees held sign-painting parties and came up with dozens of slogans, including Erik's favorite: "Marry Me, Electron Boy!"

A squad of motorcycle officers from the Bellevue police and King and Snohomish county sheriff's departments agreed to escort Erik and his motorcade. The squad escorts visiting dignitaries, and already had plans to do a training run that day. "I told them how big I wanted it to be, and they made it even bigger," Elenbaas said.

Then, the big day came. Erik, who had no idea what awaited him, got a phone call from Spider-Man. A DeLorean pulled up in front of his house. The motorcycle squad escorted them to Qwest Field.

At first, Erik seemed stunned by the hoopla and the crowds that were involved in his wish. Lightning Lad tried to help Erik understand what was going on.

"Here's this little guy who was totally overwhelmed," Burgess said. "He got into it more as the day went on. I said, 'I'm right here, Electron Boy, just stay with me, buddy.' "

Erik's wish was one of the biggest the Seattle chapter has ever done. And it was also one of the least expensive, because nearly everything was donated.

Days later, some of the 250 PSE employees who cheered Electron Boy's heroics were talking about how Erik's wish had affected them — as if, by turning Erik into a superhero, they had all been touched by some of that same magic.

"Some things just have a magical connection ... bigger than the parts you put in," said "Energy Jim" Hutchinson, who played the part of a trapped PSE worker.

Said Elenbaas: "It's a great wish — I knew it would be."

No cape needed

A week after his big wish came true, Erik is back in his Electron Boy costume again, bouncing around his Bellevue home with foster brother Kenny. The boys wrestle, gently, for a moment and then Erik rests next to his mom, leaning his head against her. The next minute, he jumps up to show visitors a Spider-Man clock he got from the Make-A-Wish Foundation.

He's shy, but also goofy and spontaneous. He likes to color and play with action figures, and he loves superhero movies, especially "Spider-Man." He points out that his costume does not have a cape because, as anyone who saw "The Incredibles" knows, capes are nothing but trouble for supers.

He shows off a sign made by PSE employees that says "You rock, Electron Boy," and then turns it over, where he has added his own words: "Yes, I do."

He confesses that he's got a girlfriend — maybe two — but then grows coy about who they are. "Them who shall not be named," he finally says.

The Martins know harder days will come. But right now, these days are all about Electron Boy.

After his big wish day had ended, Make-A-Wish coordinator Elenbaas said to Erik: "You do realize you're a superhero."

"Yes."

Elenbaas continued: "You do realize another superhero power you have — you're making a lot of people smile."

And that made Erik smile, too.
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
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