This month the SobelCo nonprofit spotlight is shining on ‘Liv Like a Unicorn’, an organization born out of one family’s tragic experience that has touched so many lives in such a positive way.
We all know that life can change forever in just an instant.
That is exactly what happened when Olivia Lipnicky, a kind and gentle, fun loving and imaginative seven-year old began complaining about shoulder pain. Since she had recently fallen while snow boarding, the most obvious determination was muscle sprain. But that was not what was going on in Liv’s tiny body. Instead, after many rounds of examinations and consultations, the doctors ultimately discovered a malignant tumor growing in her spinal cord.
In just an instant she went from a healthy, joyful soccer player to a child who had about six to nine months to live due to the presence of a diffuse midline glioma with the H3 K27M mutation. What emerged from all those frightening and unfamiliar words was a stage four cancer diagnosis.
But this is a special family – and one that doesn’t give up. Inspired by Liv and her amazing resolve, as soon as her radiation treatments ended, her parents began to aggressively research possible next steps. As a result, Olivia was enrolled in a clinical trial for a new medication called Onc201. As summer approached, she amazingly regained most of the abilities she had lost during surgery and it seemed she had beat the odds. She was symptom free!
But feeling good didn’t mean Liv ever forgot her circumstance. Instead of focusing on herself and her own progress, she continued to worry about other children dealing with cancer. She took the lessons she learned from watching her parents and was motivated to do more. Instead of just having fun, she used the time she was given that summer to organize the first “Liv like a Unicorn” clothing drive – launching her own fundraiser and generating over $10,000 for pediatric cancer research.
But just as she was considering going back to school that fall, Liv began to experience excruciating headaches. Her tumor had started to spread. She now had several tumors inside of her spinal cord, disease in her spinal fluid and the ventricles of her brain. On October 6th she was rushed unconscious by ambulance to her treating hospital NYU where she had an emergency shunt implanted. She never left the hospital and continued to decline, taking her last breath in her mother’s arms on November 6th, 2019.
But Liv’s story, impact, influence and ability to encourage others didn’t end on November 6. Her force for love and for doing good didn’t end in an instant.
Instead, this eight-year old had touched everyone she met with her magical presence, seeming to be so perfect that she almost seemed unreal. And as such, she left a powerful legacy behind that most people who live ten times longer than she did will never attain.
The first lesson she taught to all those around her was how to love purely, with no pretense – reminding them to let their whole being fill with sweet, all-encompassing love. Her emotional strength, honed during those brief eight years of life, was rooted in love – genuine, sincere, and life changing for all.
The second lesson instilled by Olivia was to help others, to try to keep others from pain and suffering, and to keep pushing for a better way to deal with pediatric cancer.
Liv’s family, her parents – Emma and Brian and her younger brother Jack – have embraced Liv’s mission, following the lessons she taught them. The main message of “Liv Like A Unicorn” is to #bethegood, focusing on curing pediatric brain tumors and enriching the lives of those whose families suffer from these devastating diseases. Together, and with the support of their board, their staff, their volunteers, and the entire community, they continue to fill the world with love while pursuing Liv’s goal for raising awareness and for raising the essential funds needed for vital research for pediatric brain and spinal cord tumors.
Learn more about the role you can play to be the good for others, please visit https://www.livlikeaunicorn.org.
