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Jun 24 2016
by Marie Fayssoux

Life According to Ellie

By Marie Fayssoux - Jun 24 2016
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As you danced in the light with joy, love lifted you. As you brushed against this world so gently, you lifted us. -TC Ring

Twins Ellie and Grace Potvin were born on October 31, 2001. They were just what their parents Amy and Tim had hoped for: smiley, happy, and healthy. They were best friends but also independent. Ellie's favorite color was pink, Grace's was blue. Ellie loved pigs and Grace adored cows. But they both specialized in being kind.

Six years passed and the girls were still as wonderful as ever, aside from a leg ache Ellie had that was dismissed as growing pains. On July 6, 2008 Amy found a hard lump on Ellie's pelvis, prompting a visit to the hospital. After extensive testing, six-year-old Ellie was diagnosed with stage IV Rhabdomyosarcoma, a very rare pediatric cancer. From her pelvis it metastasized to her lungs. The Potvin family was thrust into chaos. Ellie underwent 30 straight days of radiation and 42 rounds of chemo before entering remission in the June of 2009, less than a year after her initial diagnosis. Ellie and her family were "in it to win it," from the beginning and finally, the nightmare seemed to be over! Life slowly began its return to normality.

Sadly, not even three months later, Ellie relapsed. Things got worse and worse but Ellie continued to emanate a light that touched the world. Team Potvin never gave up, not even on the evening of June 22 when Ellie's growing pelvic tumor pushed through her skin. Ellie suffered. She feared. She, for once, was purely a child: an eight-year-old girl who knew her hopes and dreams would be cut short. On June 23, 2010 Ellie Shoal Potvin passed away with 40+ tumors in her lungs but peace in her soul.

During her last days she prayed and asked to be anointed with holy water. She told her family of Heaven's beaches, with parrots instead of seagulls, no jelly fish, fruit trees and peanut plants, a 19 story mansion and multitudes of friendly sea animals. She was able to accept that her journey on Earth was done and left her mom, dad and twin sister with messages of love.

Throughout Ellie's fight that lasted almost two years, she accumulated a support system of thousands spanning the globe. #LiftUpEllie was a trending topic on Twitter the day she died. Cards of condolence came pouring into the Potvin's home and balloon releases were held across the world in Ellie's honor. She was, and is, a hero.

June 23, 2016 will mark six years since Ellie passed away. Her twin sister and best friend, Grace, is now 14. Amy has given birth to two "rainbow babies," Ava Shoal (4) and Lottie Grace (7 months). She and Tim continue to share Ellie's story and fight for pediatric cancer awareness via the Lift Up Ellie Foundation. Amy is also a holistic life coach and representative for Isagenix. The Potvins are still "in it to win it."

Hardly a day goes by that I don't think of Ellie. I see her everywhere: in bright sunsets, butterflies and random flecks of glitter. She is the main reason I'm pursuing a career as a child life specialist. Though I followed her fight for only a few months before her death, she left a lasting impact on my life. I take every chance I get to share her story, so, to honor her memory and her life mission I've compiled a list of things that you can do to live life according to Ellie.

Whatever you believe in, believe with all of your heart.

Ellie had an immense faith in God and His ability to heal her. She never doubted His plan. She wrote the Bible verse Jeremiah 29:11 on the bottom of her sneaker and drew multiple pictures of angels. I never met Ellie in person but it is with confidence that I say that she'd want everyone to hold fast to their spirituality, whether it be traditionally religious or otherwise. She recognized the power of positive energy and the peace and healing that it can bring.

Have fun.

There are many videos on Amy's Youtube channel in which you can hear Ellie's infectious laugh and see her glowing smile. Just about every minute of her life was filled with joy. She loved to giggle with her sister Grace and run along the beach. She never let cancer or any other hardship steal her quality of life. If a little girl fighting for her life can find time to be happy, so can you.

Follow your dreams.

Ellie was wise beyond her years and often showed a knowledge that transcended this world. It is my guess that deep in her heart she knew she would never grow old, but that didn't stop her from pursuing her dreams. In Ellie's short eight years on this earth she became a singer and an artist, performing covers of her favorite songs for her mom's Youtube subscribers and working with a local artist to produce multiple prints of her work. You can still purchase her paintings, the most famous being "Blue Moon," and "Pinkie Power."

Be kind.

For just about their whole lives Ellie and Grace could be heard saying "we specialize in being kind," and they truly did. They were empathetic friends that would go to great lengths to cheer someone up, whether it be a peer or a parent. A family friend of the Potvins once told me that Ellie gave great hugs and that's one of the things she missed most about her. It was Ellie's mission to make the world nicer, one kind act at a time. Follow in her footsteps. Buy someone else's coffee. Smile at a stranger. Adopt a puppy.

Never give up.

Ellie was robbed of a normal childhood. At diagnosis, Ellie was given less than a 50 percent chance of surviving five years. She underwent horrific treatments, lost her hair and experienced terrible pain, but she never gave up. Even after being told of her relapse she clung to hope and mustered all the bravery she could. She fought until the very end, telling her parents, "I don't want to die," and, "I am strong." She is a perfect example of how to persevere against all odds.

Help others in any way you can, especially those without a voice.

Ellie lived her life in a way that whoever she encountered, she helped. Some she made smile, others she helped to restore their faith. She was a friend to whoever needed one and she was a symbol for all that were in her shoes. Her vivacious nature caused people to love her, to fight for her even after her death. To this day, there is an army of people fighting to give children the chance at a long life Ellie never had. Ellie was one of the 250,000 children diagnosed with cancer worldwide every year, one of the 250 that die every day. There are dozens of types of pediatric cancer and hundreds of subtypes, many of which have less than a 50 percent chance of five-year survival at the point of diagnosis (DIPG-1%, Neuroblastoma-50%, Rhabdomyosarcoma-35%-95% depending on case) There have only been three drugs approved specifically for use on children with cancer in the past twenty years and less than 4 percent of federal cancer research funding goes to all pediatric cancers as a whole. But that can change. There will come a day where fewer kids have to suffer and fewer kids have to die. All it takes is a passionate few to start a revolution. You can be part of that few.

To find out more about pediatric cancer and what you can do to help, visit http://www.alexslemonade.org/childhood-cancer-factshttps://www.thetruth365.org, http://www.kidsvcancer.org/facts/ and http://liftupellie.com


Lead Image Credit: Amy Potvin via caringbridge.com/visit/elliepotvin

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Marie Fayssoux - University of North Carolina at Chapel Hill

Marie is attending the University of North Carolina at Chapel Hill. She plans to major in human development/family studies and minor in creative writing. She has an affinity for Guinea pigs, hairless cats, glitter, avocados and changing the world. Follow her on Twitter @MissMarieAsh

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