Our Story

Meet Liv. Our founder and north star.

Olivia was a typical 7 year old little girl. She loved unicorns, American Girls, and playing travel soccer. A few weeks before her 8th birthday she started to complain about shoulder pain.  We attributed her discomfort from a fall from snow boarding but brought her to an orthopedist to get her checked out. The doctor's opinion was that it seemed to be a bad sprain and felt that it would heal in a week or two. However, the pain continued to increase and poor Liv would wake up screaming every night.  After many sleepless nights along with multiple doctors visits, x-rays, and MRIs, we knew something wasn't right. Trusting our instincts, we took Liv to the emergency room at the Children's Hospital of Philadelphia. After several hours, the doctors thought it was a nerve issue and ordered an MRI.  When the results came back we were pulled into a tiny room and told that our healthy, beautiful, kind little girl had a tumor in her spinal cord.  In that moment our lives were forever changed.  She was  admitted and booked for surgery to try to remove as much of the tumor as possible. A few days after her 8th birthday our little girl was brought into surgery which lasted 14 hours. They were able to remove 40% of the tumor but Olivia came our of surgery unable to walk or use her right arm. 

On March 1st (Liv’s dad's birthday), the pathology of Liv's tumor came back. We learned that she had a diffuse midline glioma with the H3 K27M mutation.  Because of this mutation, the doctors upgraded to her cancer to stage 4 and said it was similar to DIPG. We were told she had an estimated 6-9 months to live, to go home and make memories.. That is when our real fight began.

After 6 weeks of radiation, we threw ourselves into research to find next steps.  Olivia was enrolled in a clinical trial for a new medication called Onc201.  That summer we thought that we had beat the odds,  Liv had regained most of her abilities, was symptom free and having tons of fun in the sun!  She continued to worry about other children dealing with cancer and was inspired to organize her own fundraiser.  That summer she raised over $10,000 for pediatric cancer research.  We even started the process of getting her back to school.

Towards the end of the summer Liv began to experience excruciating headaches which landed us in the emergency room on several occasions. On the day before she was supposed to go back to school we found out that her tumor had started to spread. She had several tumors on her spine, disease in her spinal fluid, and the ventricles of her brain. On October 6th Liv was rushed by ambulance to her treating hospital NYU, she was unconscious and had an emergency shunt placed. She never left the hospital and continued to decline. Our little girl took her last breath in her mothers arms on November 6th, 2019.

Olivia was our Unicorn, someone so magical and perfect it almost seems like she could not have been real.  She taught everyone around her how to love so purely, with no pretense - just sweet all encompassing love.  We would tell each other multiple times everyday how much we loved each other,  I would follow up with, "I love you more."  She would answer me with, "Not possible.  I love you more than all the stars in the sky."  Liv is now our own north star.  Everyday we will live our life in tribute to her. 

 

Cancer will never be what we remember about Liv.  We will remember her selflessness while she fought an unimaginable battle.  She never complained, and worried more about those around her, and the other kids who were fighting the same terrible disease.

 

Our mission is to support families dealing with pediatric brain and spinal cord tumors, as well as support research so one day no other family will have "go home and make memories".