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.

Honor your child

Lisseth Argueta

Born: October 22, 2005
Diagnosed: March 23, 2010
Died: August 16, 2011

~ Compassionate ~ Lovable ~ Silly ~

Mom, Morena, remembers Lisseth: “I would love for you to honor my beautiful baby cakes (as I called her) Lisseth was a girly, girl but also a little tough cookie. She loved anything that sparkle and had to have her favorite colors pink and purple. Lisseth would light up a room with her smile, and she was always the center of attention. During her 17 month battle with DIPG, Lisseth never complained about pain or anything else, she always had a brave face on. She was fierce just like her momma. Lisseth would make cupcakes on a daily basis, as her journey was coming to end, she continue to make cupcakes and would always say, I’m having a harder time making them, but with a little sprinkle it will shine beautifully. It will be perfect. Lisseth was perfect. We miss her so much.”

Mom, Morena, along with David (daddy) Jocelyn (sister) Jacob (brother) “want everyone to know of my daughter Lisseth that she existed in this earth. Cancer took her away from her loving parents, siblings, grandparents, cousins, friends. The worst kind of cancer we came to know of DIPG, it is just a horror life to a child who goes from being a normal active little girl, to a little girl who longer can run, play, eat or use her words especially to hear I love You! We need to have those who have not gone thru my shoes, to be aware of this DIPG.”


Ryan Arnold

Born: March 3, 2007
Diagnosed: January 23, 2012
Died: August 10, 2012

~ Loving ~ Kind ~ Compassionate ~

Mom, Rebecca, remembers: “Ryan loves to work on he farm. He would wake up every morning put on his Carhartt overalls and say ‘we got work-a-do?’ He loved helping with everything.”

Mom (Rebecca), Dad (Chad), sister, Elyssa, and brother, Jered, want to share Ryan’s story because: “It’s important for others to know Ryan’s story because his story is what motivates us to continue to fight for a cure.”

Learn more about Ryan’s story at ryanshopeorg.com.


Liberty Arnold-Simon

Born: August 22, 2010
Diagnosed: August 25, 2015
Died: December 20, 2015

~ Whirling dervish ~ Creative ~ Athletic ~ Friendly ~ Funny ~

Mama, Sara, remembers Liberty: “Liberty loved to swim, especially underwater. She was exceptional at it, but she had trouble listening to instruction from teachers. All she wanted to do was swim underwater, and so that’s what she every lesson.”

Mama, Sara, Dad (Bill), sister, Verity, and grandparents Rick and Karen want others to know Liberty’s story because “she was an amazing kid and had ‘early late stage symptoms’ and then the most extreme form of DIPG anyone had seen in 30 years. Yet she fought on the edge of life and death for four months. Liberty wanted to come back to us. She wanted to live, to grow up, to make her mark on this word. When she was a baby, she said ‘I will reach the stars.’ She should have been able to get there. All DIPG children should get to grow up with their families and live their dreams.”

Learn more about Liberty’s story at Love for Liberty or defeatdipg.org/meet-the-kids/meet-liberty-arnold-simon/.


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.”

Learn more: forever4logan.com


Morgan Behen

Born: November 13, 1993
Diagnosed: May 16, 2015
Died: October 13, 2016

Determined ~ Loving ~ Kind ~ Number 1 Detroit Sports Fan ~

Morgan’s sister, Meghan, remembers: “Sadly, some of the best memories come from when Morgan was fighting cancer. Whether it was when she was first diagnosed at the age of 8 or when she was diagnosed with DIPG at the age of 20, Morgan never let cancer define her. Morgan understood that surviving was not an option, but living certainly was. And that’s what she did, she lived. She watched her favorite teams religiously, went to her favorite concerts, went to prom with a Red Wing, and most importantly every day Morgan started with the goal of becoming a teacher – through treatments and days where she struggled to walk and talk Morgan went to class, student taught, and one month before earning her wings she graduated with her degree in early childhood education. Morgan was determined to live, and that determination for life carries on in every one of Morgan’s family members, friends, and students.”

Mom (Donetta), Dad (Ted), sisters Meghan and Amanda, aunts Cheri and Gail and uncles Rodney and Chris want others to know Morgan’s story because: “People often hear cancer and think right away ‘okay, what’s the treatment plan’ but when you are told there isn’t one, that there is nothing that can be done to help your loved one, it is almost impossible to find hope. But that is what Morgan did, and hope is what she gave every person she came in contact with on her two journeys through cancer. Her contagious smile, subtle laughs, blunt honesty, and determination to teach others kept us all moving through the past few years. Because of Morgan, researches and doctors will be able to continue to learn in hopes that they will find a treatment, even better a cure for DIPG. We were blessed with 18 months with my miracle of a sister, with continued studies, I am certain that Morgan will help give families more hope and even more time with their courageous fighter.”

Learn more: www.MorgansGolfClassic.com


Ronny Betterley

Born: June 21, 2010
Diagnosed: March 23, 2017
Died: January 29, 2018

~ Lovable ~ Compassionate ~ Kind ~ Friendly ~ Funny ~

Mom, Anita, remembers: “Ronny loved life and handled anything that was thrown at him. We did not let him know about his diagnosis but he defined DIPG and not DIPG defining him. Ronny starting to drive at an early age. First it was his John Deere gator, then he graduated to his Papa’s gator and then we would put him on our lap to start and steer the pickup. One day while driving home on the gravel road, we were explaining that he needed to keep the truck in the middle of the road. His response was priceless. He said it’s OK Dad, I’ve got one eye on the road and one on the field, we’re good! His Dad and I laughed so hard and told Ronny that was every farmer’s dream.”

Mom Anita, Dad Jeff, older brother Joe and older sisters Emmy and Dani want others to know Ronny’s story because “More awareness needs to be raised about DIPG. Prior to Ronny’s diagnosis we had never heard of it nor our community. The London Children’s hospital where Ronny was diagnosed handles maybe one case a year if that. It is sad that there has been no major advances with DIPG in nearly 50 years and that the outcome never changes. Ronny was fortunate when he passed that the only symptoms he had were the eye and right sided weakness. He was talking two days before and never swelled up in the face which is caused by the steroids. We are so thankful that he was spared all what DIPG could have thrown at him, but we know that there are many children who are not and that needs to STOP NOW! The course of treatment needs to advance and give all children a chance to live laugh fully.”

Learn more: https://www.facebook.com/Ronny-Tuukka-Betterley-1481949585149639/


Beckham Bice

Born: June 28, 2010
Diagnosed: November 24, 2017

~ Funny ~ Loving ~ Kind ~

Mom, Allison, describes Beckham: “Beckham is the most adventurous, loving, 7 year old! He loves his little brother and family. He’s a momma’s boy and our whole world!”

Mom (Allison), Dad (Tanner), and brother, Brody, want others to know Beckham’s story because: “We need to find a cure and more awareness. This is the most horrific thing to happen to a child.”

Learn more: Brave Beckham


Julia Bitto

Julia Bitto

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.”

Learn more: Julia’s DIPG Journey


Julian Boivin

Born: June 17, 2006
Diagnosed: November 29, 2010
Died: July 3, 2011

~ Handsome ~ Harming ~ Funny ~ Precocious ~ Brave ~

Mom, Nettie, describes Julian as someone who loved his baby sister, air guitar, spaghetti, dance parties and movies. He could talk to anyone who would listen and befriend someone wherever he went. He was such a cool kid, but hated when people treated him like one. When nurses told him they could put on the “Cars” DVD, he would ask if they had Indiana Jones instead. Once, when they were readying him for one of his countless pokes, he declared, “I’m impervious to pain.” That little man knew how to make us laugh!

Mom (Nettie), Dad (Brad), sister, Mirabelle, and brother, Bastian, want others to know Julian’s story because, “raising funds and awareness about this devastating disease will help researchers crack the code for other families. The stories of our brave children can still make a big impact on a world they had to leave too soon.”

Learn more about Julian’s story at courageforcures.org.


Emma Buron

Born: August 11, 2010
Diagnosed: October 17, 2016
Died: May 14, 2017

~ Embraceful ~ Accepting ~ Helpful ~ Loved! ~

Mom and Dad, Ken and Vanessa, remember: “We have many memories of Emma. It was truly amazing to see her grow through her diagnosis. She was a vibrant girl who embraced her sickness. A bucket list of Emma’s was going fishing and fishing we went. She caught 11 fish, one after another. She was worming up the hooks, throwing the fish back in the water and going back for more. It was amazing!!! She was amazing!!!”

Mom (Vanessa) – along with dad (Ken) and brothers Elliott and Eugene – want to share Emma’s story because “before this happened to our sweet Emma we had no clue of the injustice that is being served to all the children who are diagnosed with DIPG. No survivors!!! This monster has taken endless lives without even a proper treatment protocol besides radiation, to eventually succumb to the inevitable. We miss our angel and will never stop telling every person I encounter about her short time on earth that blessed our family. I believe awareness is the number one priority in finding a cure and I urge anyone reading this to tell Emma’s story.”

Learn more about Emma’s story at: Embrace Emma.


Colt DelVerne

Born: February 7, 2008
Diagnosed: November 8, 2017

~ 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!”


Payton Dennis

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. Two 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.”

Learn more: Payton Strong


Lucy Duersch

Born: March 17, 2011
Diagnosed: August 5, 2016
Died: September 23, 2017

~ Happy ~ Funny ~ Bright ~ Beautiful ~ Kind ~

Mom, Vicky, remembers: “A couple of weeks before she passed away, Lucy had lost the ability to move just about everything but one of her arms and her eyes. The smile which had been ever present throughout her life was seen less and less.

“One day we turned on some music as she lay in her hospice bed at home and immediately her arm went up in an effort to dance and a smile lit up her face. Lucy was always happy no matter what happened, even when she had lost nearly all function. That’s the essence of Lucy’s personality.”

Mom (Vicky), Dad (Paul), brothers Benjamin and Rhett, sister, Ella, and brother, Henry, want to share Lucy’s story because: “Lucy was such a delightful child, full of goodness and light. She could have done so much good had she been given a chance to grow up and share her happy nature with the world. DIPG took that away. We hope that others will be touched by Lucy’s story and moved to contribute toward efforts to cure DIPG, knowing it could strike a child they love at any time.”

Learn more about Lucy’s story at Love For Lucy.


Abigail Greene

Born: February 10, 2009
Diagnosed: September 19, 2016
Died: June 15, 2017

~ Funny ~ Selfless ~ Talkative ~ Brave ~ Curious ~

Dad, Adam, remembers: “After Abigail was diagnosed the entire community rallied around us and our local High School made her the ‘Guest of Honor’ for a football game. All of her friends, family and fellow Girl Scouts came out to support her and show her love. Prior to the game the Varsity Football team all gave her a red rose and said thank you for being brave. It was cold, she was uncomfortable and still recovering from her biopsy surgery but all she cared about was being able to share all of the roses with the friends and family that came out to see her. That was Abby, she was selfless and cared about others more than any other child I have ever known. She was funny, intelligent and most of all, the bravest kid I have ever met.”

Dad (Adam), Mom (Rachel), and sister, Emma, want others to know Abby’s story because “Abby never had a chance. She was given a 6-9 month window and we were told that nothing can be done. Because only 4% of funding is dedicated towards Pediatric Cancer research and she deserved more than that. Because every DIPG child and parent deserve more from our Healthcare system than just being told to ‘Make Memories’ or try and raise tens of thousands of dollars for experimental treatments in other countries. Because she never harmed a fly in her life and deserved all the best things that life has to offer, but was denied that due to the cruelest cancer on earth. A mostly because she was a great kid and deserves to have her story shared with the world.”

Learn more about Abby’s story at anotherdaywithabby.com.


Kaylan Haywood

Born: December 23, 2006
Diagnosed: February 16, 2018

~ Funny ~ Courageous ~ Fearless ~ Fighter ~ Believer ~

Mom, Michela, has this to say about Kaylan: “The memory that sticks out the most to show her personality is when we were told how bad the diagnosis was. She leaned it to me and said, Mom it is not my time. We will fight this. God will heal me.'”

Mom (Michela), Dad (Gaylan) and big brother, Josiah, say: “It is important that people hear our story so that it brings more awareness to this evil disease. Before 2/16/2018 We had never heard of it. We will fight this with all we have for our daughter and other kids.”


Brooke Healey

Born: September 3, 2008
Diagnosed: January 14, 2013
Died: September 6, 2013

~ Silly ~ Strong ~ Loving ~

Mom, Stefani, remembers: “Brooke was a true spitfire. Loving, silly, strong, beautiful and all in. When Brooke was battling, I became pregnant and she rubbed my belly, through her pain, to connect with her younger sibling she would never meet in person. She was an amazing little girl and I am honored to call her my daughter.”

Mom (Stefani) – along with Dad (Steve), brothers Ashton and Shay, and sister, Bryn – want to share Brooke’s story because: “We need more funding for research. Selfishly, I want her to live on and to be remembered. In the bigger picture, these kids are warriors that deserve their battle cry to be heard.”

Learn more about Brooke’s story at brookehealey.com.


Avery Huffman

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.”

Learn more: averystrongdipg.org


Bruce Incorporated

Bruce Incorporated

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.”

Learn more: Love for Bruce


Leah James

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.”

Learn more: leahshappyhearts.org


Christian Johnson

Born: August 21, 2010
Diagnosed: June 26, 2015
Died: April 3, 2016

~ Funny ~ Courageous ~ Energetic ~

Mom, Keisha, describes Christian as “so energetic. ALWAYS moving and running everywhere he needed to be. I literally and constantly said to him ‘slow down’ or ‘wait up.’ Whenever someone called his name he always replied ‘huh?’ Like a little goose and that’s how we started calling Goose. He was the drummer, guitar player, and lead singer in his own band. His twin brother and older brother were only involved when he let them.”

Mom (Keisha) along with Dad (James), twin brother, Zion, and brother, Jordan, want others to know Christian’s story because “My son at first had been diagnosed incorrectly. At the age of four he had been diagnosed as adhd, mentally handicapped, and finally as bipolar. Those were all wrong. It took his daddy taking him into our pediatrician for a check up to play football; and him falling down and hitting his head hard enough on the floor to where the doctor was concern enough for to send him for an MRI for us to get a referral to children’s medical in Dallas for us to finally discover what was really wrong with my son. I don’t know if others had been diagnosed incorrectly but for us, I feel that we as a family lost a lot of time when it came to his treatment. No family should lose time with their babies.”


Milla Joseph

Born: July 15, 2010
Diagnosed: January 27, 2015
Died: October 1, 2015

~ Funny ~ Pure Life ~ Beautiful ~ Rousing ~ Cheerful ~ Bright ~

Mom, Inga, remembers: “Milli was always on the move. Even during her kids sports lessons she loved to run a few additional rounds, looked so athletic and beautiful. She loved sharing. When she got sweets from friends she always asked for one more for her sister. She had a very strong happy character and lots and lots of ideas, she loved to make us laugh. Two days before she died, she had already lost the ability to speak and to move her mouth, she laid in my arms and tears run over my cheek and Milli turned with two fingers of her hand her mouth into a smile.”

Mom Inga, Dad Micha, and older sister Selmi want others to know Milla’s story because “DIPG can hit everybody, such an unknown terrible disease with no chance to survive. Imagining that parents somewhere in the world are still being told that her child is diagnosed with DIPG and will definitely die, because there is no cure, no chance, no progress in the last 30 years, hurts me so much. It reminds me of the day when our sweet Milli got the diagnosis. It makes me stop breathing and I nearly throw up. I miss her so much, every minute. I want her to be remembered, to live on, to be heard and to fight for a chance to cure DIPG.”


Oliver Lamb

Born: September 9, 2009
Diagnosed: April 6, 2013
Died: February 3, 2014

~ Loving ~ Hilarious ~ Kind ~

Mom, Gretchen, remembers: “Oliver lit up the world he lived in. With his curly hair, big brown eyes and super friendly demeanor it was impossible not to be drawn to him. His imagination was magical. Castles, trap setting, sword fights, dance parties; He was up for anything. Oliver’s siblings can’t remember a single day he wasn’t happy.

“He was wise beyond his years. So confident and comfortable in himself, he was always quick with a joke, hug or a kiss. He was so very easy to love!! We miss him with every breath we take. We will forever honor him by helping others however we can.”

Mom (Gretchen), Dad (Mike), brother, Kai, sister, Emerson, and brother, Atticus, want to share Oliver’s story because: “No one should ever be told “sorry there is nothing we can do for your child.” We must keep momentum moving forward. Through our story and the stories of others we can make it known that there is much work to be done. DIPG is not as rare as it seems. Our children deserve better. Together we can make things better. Through our voices and the help of others we can create progress.”


Bella Lentz

Born: March 20, 2007
Diagnosed: June 8, 2015
Died: September 12, 2017

~ Perpetually Chipper ~

Granny Dee remembers: “I found out someone was picking on Bella at school when she was in 1st grade. When I asked about it she said it was OK. ‘No, that behavior is never ok!’ I said. Bella looks me right in the eye with a sweet smile and says, ‘They just don’t know they’re my friend yet!’ ”

Granny (Dee), Pa (Mike), Great-Gran Mary Kay, Nonna Audra, uncle RJ, aunt Taylor, cousin Arya and brother Nikolas want to share Bella’s story “so she’s never forgotten.”


Elizabeth Lynch

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.”

Learn more: facebook.com/daria.lynch


Conor Moran

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.”


Michael Mosier

Born: August 27, 2008
Diagnosed: September 4, 2015
Died: May 17, 2016

~ Kind-hearted ~ Brilliant ~ Athletic ~ Loving ~ Funny ~

Mom, Jenny, remembers: We were at one of Michael’s school events when he was in preschool, with a few hundred people in the room. There was a program with an entertainer who called out to the audience for volunteers to tell a joke. Michael’s hand shot in the air, and he ran up to the stage. Mark and I looked at each other, wondering what he would say. Michael took his place at the front of the audience, grabbed the microphone, and told his joke, which was “Why did the corn cross the road?” The answer was “To make popcorn.” Like everyone else in the room, we had no idea what this meant. But Michael was as proud as could be and came back to us smiling about the joke he had just made up on the spot.

Mom (Jenny), Dad (Mark), and sister, Lila, want to share Michael’s story because: “DIPG is a devastating disease that has received far too little attention and funding for far too long. We want people to know Michael’s story because he was a beautiful, sweet, amazing little boy who deserves to be remembered. We miss him every moment of every day, and we will fight to keep his memory alive. But we also want them to know his story so that they realize that DIPG can happen to anyone. We all must band together to ensure that kids who face DIPG in the future have treatment options. We must find a cure.”

Learn more about Michael’s story at defeatdipg.org or Michael Mosier Defeat DIPG Foundation.


Dmitri Phelps

Born: April 5, 2000
Diagnosed: October 4, 2016
Died: January 20, 2018

~ Smart ~ Curious ~ Funny ~ Balanced and Fair ~

Mom, Olga, remembers Dmitri as someone who “loved international politics and we would always have discussions/ debates of world political events. He would win every time. Dmitri was fluent in four languages, got admitted to Sorbonne in Paris and wanted to work for the United Nations.

“He got a perfect SAT score 7 months into his diagnosis and going through chemo. He was on his high school basketball team and loved to play with his younger brother Sasha, his best friend. He had an amazing, dry sense of humor that all his friends loved.”

Mom (Olga), Dad (Vincent), and brother, Sasha, want others to know Dmitri’s story because “children are silently dying and the world doesn’t know it/ refuses to see it. Family, friends and the immediate communities are always supportive and wonderful, but it doesn’t extend to politicians and those in power to make cure a priority.”


Sophie Quayle

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.”

Learn more: smilesforsophieforever.org


Drake Quibodeaux

Born: June 17, 2010
Diagnosed: March 11, 2018

~ Strong ~ Compassionate ~ Funny ~ Kind ~

Mom, Danielle, says this about Drake: “Drake gets care packages and makes sure to share with his baby brother.”

Mom (Danielle), Dad (Chris), and brothers, Haidyn and Gunner, want others to know Drake’s story “to spread awareness.”

Learn more: Drake’s Battle with DIPG


Brison Ricker

Born: January 4, 2001
Diagnosed: January 22, 2016
Died: December 23, 2017

~ Strong ~ Courageous ~ Inspiring ~ Loving ~ Unforgettable ~

Mom, Kim, remembers: “Brison had a passion for life! He had big hopes & dreams and was always willing to put in the work to make them happen! Brison was awarded best offensive player of the year, as a freshman, on the Cedar Springs boys varsity soccer team. He placed second in the state in both dirt bike classes that he raced, the year prior to diagnosis. He also enjoyed basketball and was on the A basketball team the year prior. He was driven and always strived to be the best he could be, not matter what he was doing. Brison was outgoing, humorous, a good student, a leader amongst his peers, and loved by all that knew him. His faith was a big part of who he was and that faith never wavered, he shared that with others especially through his battle, bringing others to accept Jesus into their life, his legacy!”

Mom (Kim), Dad (Brian), and brother Preston want to share Brison’s story because: “Brison was such a special young man and he was taken way too soon. He had a lifetime of goals and dreams ahead of him, that will never take place. He will never grow up and be the amazing man we all know he would have been. He fought so hard for his life, he suffered so greatly during his battle, losing the things we all take for granted one by one. His ability to walk, move, talk, eat, hear, see, and lastly breath. This disease is horrific and no child should have to go through this and no parent should have to watch this happen to their precious child! Brison has made us forever Rickerstong and in his honor, we will share his story, we will advocate, and bring as much awareness to DIPG as possible, so we can together work towards a cure!”

Learn more: http://www.gofundme.com/rickerstrong


Sarah Rosenbaum

Born: October 4, 2006
Diagnosed: October 17, 2014
Died: April 3, 2016

~ Hilarious ~ Imaginative ~ Snuggly ~

Mom, Kathy, remembers Sarah: “Sarah was hilarious and had a love of humor from her earliest days. She had an innate sense of humor and comic timing that made everything she said funny. Her teacher said she told jokes that the other first graders didn’t get but her teacher understood. Another teacher said she moved her hallway monitor spot closer to Sarah’s classroom so she could talk with Sarah because she made her laugh so much.

“Her teachers made a book of her favorite jokes for Sarah’s celebration of life and that was the program for the event. We had a big party with all her favorite things, including a fart orchestra, which is a sing a long to the song ‘Let it Go’ with fart noisemakers used at the appropriate, or at any, time during the song. It was a perfect way to remember our wonderful, wildly imaginative and creative 9 year old.”

Learn more about Sarah’s story at: defeatdipg.org/meet-the-kids/sarah-rosenbaum/.


Christian Shaffer

Born: January 27, 1998
Diagnosed: September 22, 2009
Died: December 19, 2010

~ Courageous ~ Fearless ~ Inspirational ~ Loving ~

Dad, Blandon, remembers: “Christian ‘Lil Man’ Shaffer had just got his first dirt bike for Christmas and we had gone to a dirt bike track for his first time. After all dad’s lists of rules, do’s and donts we began to ride. As the day went on I noticed Christian getting way more comfortable and confident with his new bike. Then I noticed him studying a boy twice his size and few years older practicing a certain jump where we were riding. Before I could remind him there was ‘no getting air today’ he was off and gaining speed!! I screamed at the top of my lungs for him to stop, my mind was already made up he was going DOWN and I was preparing to pick up the pieces!! Well Christian landed it smooth like he had been doing it for years!! The boy was fearless and saw life as a challenge!”

Dad, Blandon, along with Mom, Amanda, grandparents Greg and Cherie, Jimmy and Nancy, and Uncle Garret and Aunt Tiffany want others to know Christian’s story “so people can see a face and story to our DIPG angel. People need to hear each and everyone of our stories until our children quit dying.”


Philomena Stendardo

Born: January 22, 2009
Diagnosed: September 15, 2016
Died: July 23, 2017

~ Spunky ~ Faithful ~ Love ~

Mom, Mina, remembers: “Philomena was a spunky little firecracker who saw joy in everything and everyone she encountered. She had the ability to walk herself into the heart of everyone she met, without exception.”

Mom (Mina) – along with dad (Mark) and big brother, Marky – want to share Philomena’s story because “as a parent, one of my greatest fears is that the world will forget her.”

Learn more about Philomena’s story at: stormtheheavens.org.


Alistair The Great

Born: July 12, 2010
Diagnosed: December 7, 2015
Died: June 7, 2016

~ Brave ~ Generous ~ Hilarious ~

Mom, Jasanna, remembers Alistair: “We were at a restaurant one time before Christmas and after he was diagnosed where ‘firelog’ was playing on all the TVs. Alistair looks up at the screen and says ‘Jesus Christ, that movie is so boring.’ Funny guy!!

Another story of my sweet boy. While he was seriously ill at the end of his short life, he decided he wanted to go see The Little Prince with me. We could barely understand what he was saying at this point, but as we got his wheelchair strapped into the van at the Canuck Place hildren’s hospice, he turned to me and said ‘I’m doing this for you, mom.’ We watched the movie together while having to suction out his airways every couple minutes, and I cried knowing that this movie was his gift to me. I haven’t seen the movie again since, and look forward to remembering my little prince.”

Mom Jasanna, grama Gaydene, sisters Haeven and Samaya, uncle Timothy, and cousins Elwynn, Ngaio, Ruebee, and Hazel, want to share Alistair’s story because “he was such a great kid. Anyone who knew him told me how he made such an impact on their life. He should never be forgotten and hopefully his legacy will live on forever.”


Gabriella Torres

Gabriella Torres

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.”

Learn more: strongerthandipg.org


Addalynn Trevino

Born: August 31, 2014
Diagnosed: June 30, 2017

~ Little Monster ~ Energetic ~ Hilarious ~

Mom, Jennifer, describes Addy: “Addy has always been such a little monster. If you can’t find her, good chance she’s trying out something that could be considered similar to child acrobatics. On more than one occasion we have seen Addy turn a normal environment into a jungle gym, on top of counters, in windowsills, and even once on top of the dishwasher. She’s such a brave soul and has an even more beautiful spirit, but is still, no matter what, our little monster.”

Mom Jennifer, Dad Treay, and sister, Miya, want others to know Addy’s story because: “This can happen to anyone, at any time. I had never heard of DIPG before my daughter was diagnosed. If getting Addy’s story out there to be heard can bring awareness to this beast of a cancer, then let’s spread the word. Addy, and all the other children and families going through this unthinkable journey, deserve their voices to be heard.”

Learn more: http://caringbridge.org/addybootrevino


Andrew Ward

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.”