Our Story

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 said it seemed to be a bad sprain and it should 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 doctor' visits, x-rays, and MRIs, we knew something wasn't right and it had to be more then a shoulder injury. Trusting our instincts, we took Liv to the emergency room at the Childrens 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 Olivia had a tumor in her spinal cord. Our lives changed in that instant. Olivia was  admitted and booked for surgery  to try to remove as much as 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 and told we needed to wait for pathology for next steps. On March 1st (Liv’s Dads birthday) we learned that she had a diffuse midline glioma with the H3 K27M mutation. The doctors said because of this mutation it was upgraded to stage 4 and they estimated she had 6-9 months to live. We were told to go home and make memories. Saying that this is a parents worst nightmare is an understatement.

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 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.

Unfortunately, after a few trips to the emergency room for headaches we found out the day before she was supposed to start school the tumor had started to spread. After an emergency shunt surgery we found out the tumor had spread even more and was all over  her brain, spine and in her spinal fluid. Olivia continued to decline and passed away  on November 6th, 2019  at Hassenfield Children's Hospital in New York.

Olivia was our Unicorn, someone so magical and perfect it almost seems like she couldn’t 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 reply not possible I love you more then all the stars in the sky. Liv is now our  own north star. Everyday we will live our life in tribute to her. But 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 in life is to make a difference in the horrible world of pediatric cancer.

Liv like a Unicorn is a registered 501(c)3 nonprofit organization incorporated in the state of New Jersey.

 

EIN#: 84-4043682

Liv Like A Unicorn

175 Topaz Drive

Freehold, NJ  07728

(201) 396-9056

livlikeaunicornfoundation@gmail.com