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Saturday, January 5, 2013

The impactful legacy of a 12-year-old girl and the national movement she sparked

Jessie Rees got into the backseat of her parents' car after another grueling round of chemo and radiation and looked back at the hospital through the window.
She wondered aloud: Why did she get to go home from the hospital? What about the other kids? Why weren't they going home?
Her dad, Erik, ventured an answer. It's because they have a different type of treatment, he told his daughter. You get to go home after your treatment, but they don't.
Jessie, then 11, asked another question. It's a question that caused her mom, Stacey, to start crying. It's a question that, in her dad's words, "changed the tapestry of our lives." It also started a movement that has affected tens of thousands of people all over the world.Jessie loved swimming the most. She was straight out of central casting, with blond hair, blue eyes, lightly tanned skin and the easy Southern California smile. She was a junior Olympic swimmer for the Mission Viejo Nadadores, which is where she could be found doing laps and giggling with friends. Swimming is among the most secluded of sports – you hardly see anyone else and you rarely hear them – but Jessie loved being a teammate. She yelled for her friends as they made their flip turns and made a special effort to see them compete. That's what she was doing in February of 2011 when she started complaining of headaches. Not a big deal, her parents thought, but then she started to develop a lazy eye. She had to go in for a checkup.
Doctors ordered an MRI and the result was unthinkable: Two malignant tumors in her brain stem. The cancer was inoperable. It was incurable. Erik sought "47 second opinions," he says, but every doctor told them the awful truth: there was little hope. At the end of February, Jessie was an up-and-coming swimmer. By the end of March, she was going through chemo with a 1 percent chance to live 18 months. Her parents started telling her about heaven.
Then, on the way home from one treatment one spring day, her parents explained the difference between in-patient and out-patient. And Jessie, who had one more birthday left if she was lucky, thought about the kids who didn't get to go home that day and asked:
"What can we do for them?"
What can we do for them? The question broke her parents' hearts. "She's fighting a battle she can't win," Erik says, choking up over the phone as he recalls that moment, "and she just chose to help others."
Jessie returned home that day and started to assemble brown-paper lunch bags. She plucked tiny trinkets and toys from around the house and filled the bags up with little gifts. The presents certainly weren't much, yet the gesture was everything. Her parents figured small jars would work even better, and Jessie's middle name was Joy. JoyJars. Jessie's eyes lit up at the name. That's what they would be called. And so every Monday from then on, Jessie and her dad would fill little JoyJars with toys for sick kids.
The reaction at the hospital was remarkable. "Can I keep this?!" children asked giddily. The answer was yes, of course. All over Jessie's hospital, and soon other hospitals in the Orange County area, hospital rooms of little boys and girls filled up with JoyJars.
Jessie's condition got worse. Her vision ebbed. Her headaches became more severe. Her legs, the same ones that propelled her through the water so quickly, could hardly hold her up. There were nights when Erik had to carry his daughter up the stairs to bed, holding back tears as he prayed the next day would be easier. It often wasn't. Jessie told her dad she felt "lonely and limited." Her friends wouldn't know what to say as her face bloated and she started having to wear a mask. "Her body," Erik says, "got stripped away."
And yet Jessie's power got stronger. Hundreds signed up to follow her on Facebook. Then thousands. Then tens of thousands. The swimming community began to talk about her story, even as the Olympic year drew closer. Soon the Reeses would need a warehouse for all the JoyJars.
On January 4, 2011, the Reeses put their daughter to bed. She was having headaches again. That was somewhat normal by then. But the next morning, at around 4:30, Stacey rushed into the bedroom after checking on Jessie. She couldn't wake her up.

Hospice was called. The nurses came and did everything to make Jessie more comfortable. "At 11:10 a.m.," Erik says, "she took her last breath." She was 12.
Yet as life left her body, a spark caught flame. People across the country had heard about the JoyJars, and Jessie's passing made a wave of news. Kaitlin Sandeno, the former Olympic swimmer, had been in touch with the family and decided she would attend the memorial. She arrived at Saddleback Church and was overcome: 5,000 people were there. Nearly that many watched online. Sandeno started recruiting fellow swimmers and athletes from USC, where she went to school. She had a budding career as a swim coach but she decided to give that up to help the movement. This was more important. "I let go of the swim school and the private coaching," Sandeno says. "This is what I want to do."
Jessie had a motto: "Never Ever Give Up," or NEGU. That became Sandeno's motto and the motto of dozens of athletes across the country. Over the course of 2012, Olympians and NFL players started going to children's hospitals with JoyJars. Three Jacksonville Jaguars, led by quarterback Jordan Palmer, signed up to help. Erik says Green Bay Packers quarterback Aaron Rodgers has shown interest in being a spokesperson.
"There are more than 20,000 children right now in hospital beds fighting cancer," Erik says. "Their parents have to work, so they are entertained by the hospital staff. These kids, if a person comes in with a professional jersey on, they don't care who it is. They feel special."
There are now 35 athletes working with NEGU, and Rees hopes to have 100 by the end of this year. "I feel like we really do bring a sense of joy, and the athletes benefit just as much," says Sandeno, who is now a national spokesperson. "To see the other athletes' reaction – 'When can I do another one?' – this isn't a favor. This is awesome. You're providing a cool thing for people to give back."
There aren't many who give back in a full lifetime what Jessie Rees gave back in just 12 years. What began with a few paper bags and a few toys has now reached 11 countries. In 2012 alone, 47,000 kids received JoyJars.
Christmas was very hard for the Rees family. Erik and Stacey have two other kids, Shaya and J.T., but there was an empty stocking by the tree. This weekend will mark one year since Jessie passed. It will be a difficult moment to bear; what would Jessie have done with her life this year?
Then again, the answer to that question is clear and somewhat soothing. Had she lived, Jessie would have noticed all the kids around her, whether at the pool or in the hospital. She would have considered their situation, be it happy or sad. And then the little voice in her head would have asked, "What can I do to help them?"

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