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WISHES Where They’re Needed

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— April 29, 2017

WISHES Where They’re Needed

  • A frightening diagnosis becomes the seed of an altruistic partnership with the Make-A-Wish Foundation.
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The news hit like a brick to the gut: Emily Briggs, at 13, relishing life, school, and her friends and family, was diagnosed with aplastic anemia, a rare form of bone marrow failure seen mainly in children and young adults. Though the disease, in which bone marrow does not produce enough blood cells, is not a cancer, it is often perceived as one because it is treated with chemotherapy and a bone marrow transplant. The diagnosis was a shock to Emily’s family. “This isn’t just the child who is sick. It’s the whole family,” says Susan Lange, Emily’s grandmother and human resources director at Nature’s Plus. “The family is in agony.” Emily’s diagnosis had capped weeks of anguish and uncertainty. When she fell ill a month before the disease was identified, her doctor found her blood counts were low and sent her to the emergency room. At the ER, and later at a children’s hospital, Emily recounts, days of intensive tests were inconclusive and left doctors mystified. Then, a biopsy had to be postponed because her blood counts were high. The biopsy performed a month later confirmed the results no one wanted to hear. “My blood counts were continuously decreasing,” Emily says. “Then my doctor explained that I would have to have a bone marrow transplant.” She ended up at Memorial Sloan Kettering in Manhattan, where the first ray of light broke through when a social worker told her about the Make-A-Wish Foundation, the organization that fulfills wishes in the form of travel and other requests of children and teens. with life-threatening diseases. Make-A-Wish proved not only to lift Emily’s spirits but those of her family, including her grandmother, who involved herself—and Nature’s Plus—in the foundation’s efforts to fulfill the wishes of local young people. Six months after Emily first got sick, she received a bone marrow transplant from her brother Alex, with the marrow harvested from his back. Ten days later she engrafted, meaning her brother’s marrow bonded with hers. That same day Emily, a charismatic brunette, lost her hair. “I had a lot of mixed emotions,” she says. “I was happy that everything was going well. At the same time, I was 13 and my hair was falling out and that was hard.” Through it all, the social worker assigned to Emily prodded her to consider what she wanted from Make-A-Wish. Some sort of getaway seemed to be in the running. “That was very helpful,” Emily recalls, “because I kept my mind off of the difficult things going on: losing my

hair, not going to school. She would brainstorm with me about the places I could go and look up vacations, so that was exciting.” Lange says watching her granddaughter’s path to recovery was both heartening and heart-wrenching. “I watched a little girl be separated from her friends in school, have chemicals put in her body that no child should have to endure, and through all of this horror, the whole time she was on her iPad planning a trip for her family,” Lange says.

Moved by Caring

When Lange wasn’t spending long hours in the hospital with her granddaughter, she kept company at Emily’s home with Alex while their father was working and Emily’s mom was at the hospital with her daughter. Later, after Emily returned home from the hospital, Lange marveled at the Make-A-Wish volunteers who visited. To give her family the extra care they needed during the crisis, Lange says she was frequently late to arrive at work and early to leave. Nature’s Plus president Jim Gibbons, she adds, never questioned her and was “more than fine” with her adjusted hours during the rough time. The compassion extended to other Nature’s Plus employees, many of whom traveled to the Manhattan hospital to donate blood, Lange adds. “That’s how the employees are in this company,” she says. Moved by how Make-A-Wish touched her granddaughter, Lange decided to volunteer for the foundation, visiting and helping sick children plan their wishes for the Suffolk County Chapter of the foundation. “That’s fun to me,” she says, “because I love the kids.” Before one of the children went on a trip with his family, Lange says Gibbons supplemented what Make-A-Wish was providing by

writing a company check for $1,000 with no hesitation. Make-A-Wish’s Suffolk Chapter, which grants more than 100 wishes each year, has earned five consecutive four-star ratings for accountability and transparency from Charity Navigator since the watchdog group began evaluating charities in 2011, says Karine Hollander, president, and CEO, Make-A-Wish, Suffolk County. “One of the most impressive statistics that we have for our chapter is that approximately 83 cents of every dollar that we spend goes directly toward granting wishes,” Hollander says, adding that only 7% of charities that Charity Navigator evaluates have received consecutive four-star ratings. “We’re one of the strongest in terms Many Nature’s Plus employees eagerly participate with Make-A-Wish, a follow-up to the kindness many had shown Lange’s family during their difficult trials. In 2015, Lange approached Gibbons, who gave his blessing to a “Casual Fridays” fundraiser giving employees the go-ahead to wear jeans on summer Fridays if each donated $40. At the same time, company employees did a full-court press donating and creating products for a large raffle. Just about everyone did their part. Steve Inglin, vice president/business development, whose daughter works at popcorn maker Skinny Pop, donated boxes of popcorn for sale and matched other contributions. Tom Montemarano, facilities director, donated $1,000. Rose Silano, corporate services assistant, encouraged everyone to put their rolling pins to use at home and donate baked goods for a sale she ran. And the accounting and purchasing departments donated baskets filled with goods. “It was a real group effort,” Lange says, “and we did it on company time with the company’s encouragement. The company was very much involved in this success.” The effort raised $17,000, enabling two Suffolk County children, Juliette, then a 4-year-old battling bilateral retinoblastoma, and, separately, Nicholas, then a 12-year-old with a severe seizure disorder, to travel to Disney World that fall. The next summer, “Casual Fridays” raised more than $2,200, earmarked for another Suffolk child, Thomas, 11, who suffers from epilepsy, for

an upcoming Disney trip. (To read Thomas’s story, see the box below.) The involvement of company employees didn’t end there. When one of the children Lange was working with went to a hotel with his mother, Heather Fairman, director, QA, and regulatory affairs, called the hotel and donated breakfast and lunch for them. And when Lange was headed to the mall to sell paper ornaments for Make-A-Wish, Elba Rivera, accounts payable manager, took a stack and sold them to nearly everyone in the company. “There were Make-A-Wish ornaments in offices throughout the building,” Lange says. Nature’s Plus also supports the Suffolk County Make-A-Wish Chapter’s events, including its spring Bouquet of Wishes Gala, a fall golf outing and its annual holiday party for wish children and their families.

Good News for Emily Nine months after she first got sick, after remaining at home to build her immune system, Lange’s granddaughter, Emily, returned to middle school. It was her birthday, and one of the sweetest gifts she received. Fulfilling her wish, she and her family, including her grandmother, traveled to Jamaica for a week to celebrate Emily’s renewed health. “She could have done anything; she could have gone on a shopping spree,” her grandmother says. The trip was one of more than 285,000 that Make-A-Wish has granted since its 1980 inception when its founders let Chris Greicius, a 7-year-old Arizona boy with leukemia, feel what it was like to step into the shoes of a police officer for a short time before he died. Emily, now 17, has been running track—she was captain of her high school track team—and is looking forward to starting college next year. Inspired by the Sloan Kettering nurses, she has changed her career aspirations and wants to be a nurse instead of a teacher. She says she is happy that her family’s connection to Make-A-Wish remains alive through her grandmother’s volunteer work. “Being able to see firsthand the volunteers that would come to my house, and seeing all the excitement, motivated her to want to do the same thing, which is really nice,” Emily says of her grandmother’s ongoing relationship with Make-A-Wish. “I’m glad a lot of positive things came from it. Everything happens for a reason in that way. It gave me a lot of perspective. It changed a lot of how I look at things. “When I couldn’t go to school I wanted so badly just to go back, and now when I hear people complain or even when I don’t want to be at school, I look back and remind myself that I should be thankful that I can even go to school because so many kids can’t.

for Emily Nine months after she first got sick, after remaining at home to build her immune system, Lange’s granddaughter, Emily, returned to middle school. It was her birthday, and one of the sweetest gifts she received. Fulfilling her wish, she and her family, including her grandmother, traveled to Jamaica for a week to celebrate Emily’s renewed health. “She could have done anything; she could have gone on a shopping spree,” her grandmother says. The trip was one of more than 285,000 that MakeA-Wish has granted since its 1980 inception, when its founders let Chris Greicius, a 7-year-old Arizona boy with leukemia, feel what it was like to step into the shoes of a police officer for a short time before he died. Emily, now 17, has been running track—she was captain of her high school track team—and is looking forward to starting college next year. Inspired by the Sloan Kettering nurses, she has changed her career aspirations and wants to be a nurse instead of a teacher. She says she is happy that her family’s connection to Make-A-Wish remains alive through her grandmother’s volunteer work. “Being able to see firsthand the volunteers that would come to my house, and seeing all the excitement, motivated her to want to do the same thing, which is really nice,” Emily says of her grandmother’s ongoing relationship with Make-A-Wish. “I’m glad a lot of positive things came from it. Everything happens for a reason in that way. It gave me a lot of perspective. It changed a lot of how I look at things. “When I couldn’t go to school I wanted so badly just to go back, and now when I hear people complain or even when I don’t want to be at school, I look back and remind myself that I should be thankful that I can even go to school because so many kids can’t.

Thomas’s Story: On the Road to Disney

Thomas Pettersen, 12, the oldest of four children, has had epilepsy since he was nine months old. Through years of seizures, each of which would make Thomas turn blue and require a call to 911, doctors said nothing could be done to help him. “We were always told he wasn’t a candidate for any kind of surgery,” Thomas’s mother, Casey, a registered nurse says, “that this is just the way he is and you have to just deal with this.” When his parents brought him to Columbia Presbyterian Hospital in Manhattan, however, doctors proposed surgery to remove part of the left frontal lobe of his brain, the source, they said, of his episodes. The surgery would not be curative but help relieve his symptoms and the stress that came with them. The surgery left Thomas paralyzed on one side and unable to swallow or walk. After three months of rehabilitation, his motor skills returned. “He did have some residual weakness on his right side, but he pretty much got back everything he lost,” his mother says. Thomas was able to return home. As Thomas continued to recuperate, the Pettersens were given a surprise arranged by the family’s pediatrician: The Suffolk County Chapter of Make-A-Wish would fulfill a wish for Thomas and his family. The family had been scheduled to visit Disney World, a gift from Casey Pettersen’s parents, but had to cancel when the opportunity for Thomas’s surgery arose. The choice of a wish was obvious: Disney World. The Pettersens are waiting for a sustained period of better health for Thomas before they take the trip. “He’s actually doing pretty good right now,” Casey Pettersen says of her son. “We just want to get a little time under our belt where we know he’s stable, we haven’t been to the ER and we know he’s okay to travel, because being on an airplane with a kid who has an issue and you’re up in the sky is a little scary.” She says her family is grateful for the wish and the foundation’s patience in fulfilling it. “We probably won’t get this opportunity to do something like this again. We’re not a family that can plan Disney vacations every year. It’s going to be a process, and they came in and planned the whole thing for us. I don’t have to worry about a thing. It’s just such a relief. “I’ve been to Disney World as a child,” she adds. “My kids have not been there. My husband has not been there. I know what it’s all about and I can hardly wait to see the joy on their faces.” —A.R.

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