“2015 started off to be a great year. Ben was in a great place. Tenacity was something Ben learned at a young age. Having autism made simple things in life more difficult for Ben. Bright lights, loud noises, too much or too many people were difficult for Ben to process, at first, but Ben learned his way of handling things as he grew to be ten. It is hard as a mom to not say as he grew up, but Ben didn't get to grow up. Ben was described by his teachers as having a strength that was not only present in his academic life, but in his soul. He loved making people laugh, he loved playing games and spending time with family. As his mom, I had the joy of knowing his deeply sensitive soul and loving his unforgettable deep belly laugh that came from his heart. He had a quick wit and was not afraid of a challenge. Ben had the most amazing eyes that twinkled from his heart.

Friday, June 5th was the last day of school. We had a party to celebrate the beginning of the best summer ever! Ben loved the candy cake we had that day and enjoyed playing with his twin Zak and his sister Hannah and many friends. Everyone was so happy to be kicking off the summer. Saturday was a day of celebrating Jennah's Sweet 16 Birthday! A great start to summer 2015 quickly turned into a battle for Ben's life. On June 7th our lives were instantly changed as our son had a massive seizure. As a nurse, I immediately saw the changes in Ben's eyes and knew things in the brain were extremely compromised, and his prognosis was not good.

As a mother my heart fought for my son like a lioness protecting her cub. The shock of what was happening as the reality began to unfold kept me focused on the present. I did not do any research, I just couldn't, and in reality, I didn't have time. My single priority was being certain that my boy got what he needed to survive every second that he had with me. I knew he was there, even when the doctors did not see what I saw; his eyes showed me he was there. The eighteen-millimeter brain shift from the grapefruit-size tumor that had ruptured in his left frontal lobe had caused life-threatening changes to his ten-year-old body.

Two surgeries later, the trauma caused by the tumor left Ben in a coma for 21 days before we knew the diagnosis. Glioblastoma, (GBM) the most aggressive form of brain cancer, it is a beast. Our son, our sweet boy, had brain cancer. We could not begin to wrap our heads around this news. Ben persevered. He came back to us after three weeks of being in a coma. Grandma was at his bedside when he woke up, it was Ben! The spark in his eyes was back. He laughed at my jokes, even when he could not hold up his own head; his sense of humor was still there. We transferred to Lurie Children's Hospital and Rehab Institute of Chicago for treatment. He had to learn everything, except eating, all over again. This boy who already overcome so much in his life learned to walk again and he finally go this voice back on August 17th, his first word for a second time in his life was mom. We are so thankful for this time, and all the support we had. Ben fought hard. Ben was a warrior.

On September 23, 2015 the beast won the battle over Ben's body and the light in his beautiful eyes vanished. Ben's legacy continues to touch others; his sense of humor, his sensitivity, his great big heart and his spirit lives on, leading me to help others. I know he would want to find a cure so no other child would have to suffer through all that he did. I want to share his story and the impact that this child had on others during his journey.” 

At age 10, Ben was diagnosed with Glioblastoma Multiforme.  

Tamara, Ben's Mom