Born: February 7, 2008
Diagnosed: November 8, 2017
Died November 26, 2018
~ Funny ~ Independent ~ Curious ~ Loving ~ Tenacious ~
Mom, Shannon, describes Colt as a kid who "loves to watch YouTube Videos of his favorite movie songs and sing and dance along! He loves to put on a show for everyone in the house and be center of attention!"
Mom (Shannon), Dad (Jeff), brother, Drew, sister, Mia, and twin sister, Emma, want others to know Colt's story because "his life matters! We need to do more to fight this monster DIPG. It is not just a statistic or a number, but a life with meaning and he brings joy to all who meet him!"" />
Born: June 6, 2012
Diagnosed: August 29, 2017
~ Sassy ~ Determined ~ Loving ~ Smart ~ Beautiful ~
Mom, Christy, describes Julia: "Whenever her Daddy goes to the grocery store Julia drops everything to go with him. It's their special Daddy daughter time together. And when they get home, she always presents me with a bouquet of flowers that she picked out just for me! She is a very sweet and thoughtful girl! Her smile will melt your heart."
Mom (Christy), Dad (Tim), and big brother Colin want others to know Julia's story "to spread awareness that will lead to increased funding to find a cure."
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Born: September 25, 2012
Diagnosed: November 28, 2017
~ Spirited ~ Charismatic ~ Enchanting ~
Mom, Robin, describes Bruce: "Bruce believed from the time he was a small child that he was meant to live out of doors, and has proven to be utterly impervious to all physical elements.
"On this particular day, Bruce insisted that his yaya (my mother who passed away this year of metastic thyroid cancer) take him for a walk in the pouring rain with an empty suitcase with which he had become enamored. She indulged him as always.
"Some well-intentioned citizen notified the police of a child outside in poor weather being followed by an old woman. No less than three police officers reported to the scene to investigate. When Bruce was questioned as to yaya’s identity, Bruce replied 'who, him??'
"My memory of this is being called at work and having a police officer request that I corroborate the whereabouts of my son. Members of our family laugh about this to this day."
Mom (Robin) - along with Dad (Patrick), and brothers Jack and Fred - want others to know Bruce's story because: "I remember sitting in the waiting room with my husband as Bruce was undergoing his first MRI. “What is the best and worst case scenario?” He asked me, trusting that my clinical background as a neurosurgery ICU nurse would give me insight to our sons peculiar symptoms. “Best case,” I told him “is that this is some kind of benign growth or a concussion - Let’s try not to worry ourselves. The worst case,' I said, thinking hard, 'would be that this is some kind of aggressive tumor that can’t be removed, that is resistant to chemotherapy, that only affects young kids, and that kills everyone who has it.'
"Upon the disclosure of Bruce’s diagnosis - DIPG - I was horrified to learn that I had invented in my own mind while trying to create the worst possible hypothetical affliction the very cancer that was growing inside my darling boy."
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Born: January 11, 2000
Diagnosed: July 22, 2004
Died: August 3, 2005
Happy ~ Sensitive ~ Unselfish
Mom, Karen, says: "Leah was known for always saying 'My heart is Happy.' She was so sweet and loving and her blue eyes would light up every room she walked into with her open mouthed smile. She always put her older sister first and always wanted to make sure she was given toys too, in fact she always wanted to pick out toys for her older sister. She loved Dora and Sponge Bob, and loved to color with bright bold colors always staying within the lines."
Mom (Karen), Dad (Phil), and older sister, Kylie, want others to know Leah's story because: "Leah was a healthy child that walked and talked fine. In fact she was extremely smart passing her kindergarten entrance test with flying colors. It was such a shock to us that one day she had projectile vomiting and a couple days later we find out she had a brain tumor. A tumor that was inoperable which I never even knew existed. Then to find out there is no cure and nothing has worked for any of these children diagnosed with a DIPG. The world needs to become aware of the need for research and funding when it comes to pediatric cancer, in particular brain tumors. We were that couple that believed something like this would never happen to us. We attended church with all 3 of us girls dressing the same and one proud husband. This tumor robs families and can happen to anyone."
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Born: March 3, 2003
Diagnosed: May 20, 2006
Died: August 13, 2006
~ A wise, old soul ~
Mom, Colleen, says: "Conor’s life defined BRAVERY: When he could not walk, he crawled. When he could not talk, he gave one-armed hugs that embraced our hearts. In 3 years, Conor taught us the true meaning of living EACH day with courage, determination, and love."
Mom (Colleen), Dad (Brian), brothers Brendan, Kieran, and Quinn, and sister, Maggie, want others to know Connor's story because: "In honoring Conor’s memory, we hope to support ChadTough’s mission to find a cure for the DIPG monster."" />
Born: July 4, 2003
Diagnosed: February 20, 2007
Died: October 6, 2007
~ Sweet ~ Loving ~ Curious ~ Playful ~ Inquisitive ~
Aunt Amy says: "Sophie was a sweet, loving, kind-hearted little girl who was adored by all that she encountered. Her favorite color was pink, she loved to dance and twirl, and some of her favorite things were rainbows, stickers, strawberry shortcake and Dora the Explorer. One of my favorite memories of Sophie was when we would visit my Marc and Emily, Sophie's parents, and Sophie in Avon Lake, Ohio, and my husband Brett and I would stay in the basement where Sophie would sneak down early in the morning to snuggle with us. She would start at the end of the bed and slowly climb up in between us until she was tucked in so snug. Sophie would lay there, watching Dora the Explorer and cuddling, for as long as she could."
Aunt Amy, Sophie's Mom (Emily), Dad (Marc), and sisters, Sarah and Marie, want others to know Sophie's story: "Marc and Emily created the Smiles for Sophie Foundation in memory of Sophie, and the Smile's for Sophie Foundation is dedicated to honoring Sophie's memory by providing financial support to those families burdened by pediatric brain tumors, increasing global awareness not only of pediatric brain tumors but the serious lack of funding for this research and to provide financial support for St. Jude, where Sophie was treated, and other viable organizations committed to the treatment of pediatric brain cancer."
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Born: October 19, 2008
Diagnosed: June 30, 2015
Died: February 16, 2016
~ Brave ~ Fighter ~ Creative ~ Fashionable ~ Silly ~
Dad, Brandon, remembers: "As a four-year old swimming in the pool at the YMCA, a nine-year old boy took her pool noodle. The middle child, Avery was used to having to fight back. She got out of the pool, ran to the side the boy was, jumped in the pool on top of him, yanked the pool noodle away and yelled 'that is MY pool noodle.' The nine-year old swam off in tears. Avery's toughness and willingness to battle would be come her biggest strength during her fight against DIPG."
Dad (Brandon), Mom (Amanda), sisters Alex and Addison, and brother, Cade, want others to know Avery's story "to bring awareness to the monster that DIPG is. To tell the story of a life cut too-short. To show her brAvery and fight to others, that even when the odds are against you, and there is every reason to quit and give up, if she could get up every day and make the most of it and fight through it, there are no excuses for us. And because we love her and miss and telling her story allows us to keep talking about her."
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Born: August 31, 2012
Diagnosed: April 19, 2016
Died: March 4, 2017
~ Affectionate ~ Determined ~ Joyful ~ Exuberant ~
Mom, Daria, recalls this moment that speaks to who Elizabeth was: "It was not when Elizabeth was well or when she was sick. It was when she was dying. On a mild March afternoon, as she laid on the couch, her eight year old brother leaned in and told her a joke. And Elizabeth, paralyzed from the shoulders down and unable to swallow, began to laugh, her whole body shaking with mirth and her face filled with joy as she looked up at her big brother and sister. The sound of her laughter filled the living room and still permeates it to this day. She soon lost consciousness and passed three hours later. Those who love Elizabeth find it fitting that as she stood on Heaven's doorstep, her last voluntary act was to laugh. This memory illustrates our experience of her. Elizabeth was and is joy, laughter and transcendent exuberance."
Mom (Daria), Dad (Tom), brother, Nathaniel, and sister, Gemma, want others to know Elizabeth's story because: "When Elizabeth was diagnosed, my son was ten days post op from his second surgery in three weeks. He is a regular patient at Mott for some congenital, disabling health conditions. Elizabeth and her sister would often tag along to his appointments. Elizabeth was a powerhouse and was rarely sick up until about three months prior to her diagnosis. Elizabeth's story shows the complete and devastating randomness of DIPG. If it can happen to her - if it can happen to a family with another struggling child - it can happen to any child and any family. Elizabeth was (is) our joy. The void her absence has left is indescribable. And she is one child. Magnify our agony by thousands and you can see how vital the work is of the researchers who study DIPG and the fantastic doctors and nurses who treat 'our' kids."
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Logan Asher Kinkin
Born: April 19, 2011
Diagnosed: January 27, 2016
Died: March 20, 2016
~ Funny ~ Adventurous ~ Compassionate ~
Mom, Krisztina, remembers: "Logan is our only son, middle child, and the heart of our family. Always building the biggest forts out of cushions and blankets, dancing with his 2 sisters in the living room to “Just Dance”, and racing his Power Wheels around the house. His favorite place was the nature park, sandbox, and being outdoors near water. Always cooking and baking with his Mom and sisters - chickpea cookies and black bean brownies were his favorites! He would pick every last wildflower from the yard for his Mom, with an “I love you so much Mom!” There was never a day that went by that Logan wasn’t making us laugh hysterically, with the funniest facial expressions, and expressing his love for us. Each morning Logan would start a shower for his Mom, never once being asked. As the water got warm he would write “Mom” with a heart in the steam."
Mom (Krisztina) - along with Dad (Patrick, and sisters Khloe and Aria - want others to know Logan's story because: "Logan is my life, as each of my children are. I live for them, they are my purpose, my heart, my joy, my everything. Logan only had a mere 7 weeks with DIPG before it robbed him of his life, and me of mine. If I could trade places with him I would in an instant, but with something so unfair and out of my control, I can control how I react, and ensuring Logan’s legacy lives on FOREVER I will speak of him and share his life for the remainder of mine, in the hopes someone else out there can be helped by what I’ve survived through."
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Born: August 23, 2009
Diagnosed: September 30, 2016
Died: March 26, 2017
~ Fun loving ~ Giving ~ Silly ~ Snuggly ~
Mom, Jessica, remembers: "Payton was very giving.
"After a day out shopping, Payton kept saying he needed his dad to take him to the store to get something for me that he had secretly found for me.
"2 weeks later he was hospitalized, then released home on hospice care to die.
"The first day home from the hospital he didn't stop talking about the store. We used video chat and sent his brother to the store. He said no to every ring until he saw "the one". His eyes lit up and he pointed saying "THAT'S THE ONE!". Later he gave me the ring. It was beautiful. I cried and told Payton it was the most beautiful thing anyone has ever given me and thanked him. It has a beautiful red stone, just like his favorite ring and the one he picked for his daddy. I'll cherish it forever."
Mom (Jessica) - along with Dad (Jason), brothers Wesley and Jordan, and sister, Maddison - want others to know Payton's story because: "Before Payton waa diagnosed, I had never heard of DIPG. I feel the more people who know about this horrible disease, the more awareness we can all raise together and the more funding we can raise towards a cure. Payton's life mattered/matters, as well as the lives of all of the other children battling and lost to DIPG. We need better treatment options at least, and a cure for DIPG. With the majority of people in the "dark" this cannot be accomplished."
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Born: October 13, 2000
Diagnosed: November 3, 2008
Died: August 20, 2009
~ Smart ~ Sweet ~ Stubborn ~ Generous ~
Mom, Roxanne, remembers: "Andrew was such a loving and generous boy. He was a great brother. He loved to wake up early on the weekends and make his two younger brothers breakfast. He would not let me help him. He was only 5 so he would push a chair over to the counter and get the bowls and cereal from the cupboard. He would help his brothers get in their booster seats and they would all eat cereal together."
Mom (Roxanne) - along with Dad (John), brothers Brandon and Nolan, Stepdad, Tracey, step-sisters Mckayla, Jada, and Aryanna, and Grandmother Sandy - want others to know Andrew's story because: "So people know this is not a rare disease. So many families have children fighting this horrible disease and a cure needs to be found. My child was not a statistic. He was a great person who was loved by so many people. His death affected so many lives. People need to know how DIPG changes so many lives for the worse."" />
Born: October 30, 2009
Diagnosed: March 17, 2015
Died: November 7, 2015
~ Bossy ~ Funny ~ Silly ~ Loud ~ Caring ~
Mom, Isabel, remembers Gabriella: "She didn’t mind being called 'bossy pants' because she said she liked telling people what to do. We knew she was destined to be an amazing leader. She just didn’t have a fighting chance with DIPG."
Mom (Isabel), Dad (Cecilio), brother, Jadon, and sister, Amaris, want others to know Gabriella's story because: "We told Gabriella we would share her story. It’s important that we continue her legacy by helping others affected by DIPG, raising DIPG awareness and also helping fund DIPG research."
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For the 2nd Annual Champions for Change Gala, The ChadTough Foundation is honoring children who have fought or are fighting Diffuse Intrinsic Pontine Glioma (DIPG).
We were inspired to begin fighting because of Chad’s story, but there are many, many other stories. We continue to fight because there are plenty of beautiful lives still worth fighting for and because we have a great deal of HOPE that change is coming.