09/01/2025
💛✨🎗️Sophia Brielle Benintende
Aka Sophia the Fierce 💛✨🎗️
“Imagine finally feeling that your family is complete. You have survived the sleepless nights of the infant and toddler stages and are ready to enjoy building the next phase of life with your children. Then one doctor’s visit changes everything.
In July 2021, our daughter Sophia was a healthy, lively seven-year-old. She had just returned to school after more than a year of COVID shutdowns, excited to be a third grader at Country Parkway.
That summer, Sophia began complaining about a pain in her side. We assumed it was a pulled muscle from the monkey bars. But when my husband felt a lump in the spot where she was hurting, my heart sank.
Within hours of a sonogram, doctors discovered a solid tumor. A CT scan revealed additional tumors on her lung lining. Soon after, a biopsy confirmed what no parent ever wants to hear: Sophia had Ewing’s Sarcoma, a rare and aggressive pediatric cancer.
Sophia immediately began treatment: fourteen rounds of chemotherapy at Roswell Park and Oishei Children’s Hospital, along with thirty-one rounds of radiation at Sloan Kettering in New York City.
One of her chemotherapy drugs was doxorubicin, known as “The Red Devil.” It earned its name because it literally turned her tears and urine red. The side effects were brutal. Nausea, vomiting, diarrhea and it carried the risk of permanent heart damage.
Sophia also had to take Neulasta shots after each treatment to help restore her white blood cells. The injections caused severe muscle pain and fevers, which meant countless trips to the ER. Each time, doctors had to rule out infection from her port. Even when it turned out to be a false alarm, she would be admitted until she was fever free for twenty four hours. Out if all Sophia endured the Neulasta shot is what she feared most.
Despite all of this, Sophia pushed through. In April 2022, we finally received the news we had been praying for: she was cancer-free.
Sophia began eight weeks of maintenance chemotherapy to prevent relapse. During this time, instead of focusing only on her own recovery, she was determined to give back.
She planned a lemonade stand fundraiser. What began as a small idea on our front lawn grew so big it had to be moved to our family deli. Sophia even created her own sandwich, the “Going Gold Sangwich,” with all proceeds going toward her mission.
But one week before the big day, her scans showed relapse. New tumors had appeared near her heart. We were told her chance of survival was less than five percent.
Imagine having to tell your 8 year old child that her cancer had returned, that she would have to start chemo again, lose her hair again, miss another year of school, birthday parties, and family gatherings. Imagine the fear in her eyes when she realized she would have to get the neulasta shot again. It was devistating.
We as parents are supposed to protect our children, we would do anything in our power to keep them safe and from harm. And this was one thing we couldn’t prevent, no matter what we did. The the realization that our child may not get the chance to graduate high school, college, have a house, her own family and kids brought us to our knees begging God to intervene. Hoping and praying that our daughter was not the 1 out of 5 children to pass away.
Even in the face of this devastating news, Sophia insisted on holding her lemonade stand. She sold t-shirts, yard signs, raffled off Bills tickets and a tailgate package. She also wrote to Buffalo Mayor Byron Brown, requesting that September be officially recognized as Childhood Cancer Awareness Month. The mayor agreed, and Sophia was hand-delivered the proclamation. Sophia was able to present the certificate and a $7000 check raised from her lemonade stand at the Shine Gold fireworks event in 2022.
That same night, Sophia The Fierce Inc was born. Sophia spoke to a selfless lawyer willing to help Sophia get her foundation off of the ground.
For the next nine months, Sophia traveled back and forth to Cleveland Clinic for trial treatments. She endured surgery, radiation, fluid in her lungs and heart, and eventually lost the ability to walk on her own.
Even as her body weakened, she never stopped thinking of others she continued to spread kindness wherever she could.
On May 9, 2023, at only nine years old, Sophia gained her Angel Wings. She did not want to go. She still wanted to fight. But her body could no longer keep up with her fierce spirit.
Sophia was more than a child with cancer. She was brilliant, funny, kind, and faithful. She dreamed of helping other children and their families feel joy even in the darkest of times.
Today, her legacy lives on through Sophia the Fierce Inc., an all volunteer registered 501(c)(3)which continues her mission of supporting kids, their families and caregivers in the fight against pediatric cancer. Sophia the Fierce Inc is made up of three initiatives. Respite, Research , Relief.
Respite – Sophia dreamed of creating a respite home where families could rest, heal, and make memories together. Until that dream becomes reality, we arrange private gatherings where families can enjoy professional family photos, food, entertainment, and moments of joy.
With the help of G&T Customs we give kids the opportunity to design their own custom pair of sneakers, an inicitive inspired by the pair of sneakers Sophia was gifted from her beloved friend Kaiir Elam.
Research – We proudly fund groundbreaking research at Roswell Park Comprehensive Cancer Center, led by Dr. Joyce Ohm. This research targets rare pediatric cancers like Ewing’s Sarcoma, with the goal of developing safer, more effective treatments. With only four percent of federal cancer funding going toward pediatric cancers, organizations like Sophia the Fierce are critical to driving change.
Relief – We provide direct financial support to families facing the overwhelming costs of treatment. From down payments on vehicles to gas cards, meal deliveries, hotel stays, and supplying wishlist items such as snacks, food, daily necessities and toys like Legos to Roswell Park’s pediatric cancer clinic amd The oncology floor at Oishei .we step in where families and caregivers need us most.
Sophia should not have suffered. She should not have lost her childhood. Sophia should not have died. Neither should the 50,000 children currently battling cancer.
Our children deserve more than four percent. We need to do better, continue to raise awareness so no parent or child has to hear the word cancer again.”
To learn more about Sophia the Fierce Inc. please visit Sophiathefierce.org
Told with love by,
Kristina Benintende, Sophia’s Mom
