We’re excited to introduce you to the always interesting and insightful Emma Edwards Lipnicky . We hope you’ll enjoy our conversation with Emma below.
Hi Emma , really happy you were able to join us today and we’re looking forward to sharing your story and insights with our readers. Let’s start with the heart of it all – purpose. How did you find your purpose?
In February 2019, our world was shattered. We heard the words “Diffuse Midline Glioma” and were told our previously healthy 8 year old daughter had 9 months to live”. The summer Olivia was fighting her incurable cancer she organized her first fundraiser and Liv like a Unicorn was born. She raised over $10,000 to help fund the clinical trial she was a part of. All of this started with a child’s simple dream: kids deserved better. They deserved to live.
About this time 4 years ago I was bringing Liv home in a wheelchair, getting ready to start radiation. A month prior she was playing soccer, snowboarding, doing everything a typical active newly 8 year old does. She started complaining about her shoulder which we thought was a sprained muscle… we brought her to the ortho and they told us rest and ice. A few days later it seemed to be getting worse.. so back to the doctor we went. This time they did a quick X-ray and put her in a sling. For two weeks my daughter would be up every night screaming in pain, begging for us to help her. After several more visits to the doctor they brushed me off as a hysterical mother, saying there was nothing more they could do for us.
Trusting my mother’s intuition I put Liv in the car and made the hour and a half drive to the Children’s Hospital of Philadelphia. They sent her for a cat-scan, minutes later my husband and I were pulled into the tiny room… just like in the movies. “We found a tumor inside of her spinal cord, we are admitting you and scheduling surgery right away. I couldn’t breath, none of it felt real. That was the moment… my life will forever have a pinpoint of that night, those words, nothing would ever be the same for our family.
Olivia had surgery a few days later, my husband and I sat in the waiting room for over 14 hours while they tried to remove as much of the tumor as they could. Because it was intertwined throughout her spinal cord fibers they were only able to remove about 40%, and she came out without being able to use her right side. A week later we again were pulled into a tiny room… they told us the biopsy came back and our previously healthy daughter only had 9 months to live. We were told to go home and make memories.
Our family threw ourselves into research trying to find any clinical trial to help. We found something that seemed hopeful out of NYU. So 3 days a week we would make arrangements for someone to handle our kindergarten aged son so we could make the nearly 2 hour drive into NY. While we were going through out Journey we learned a lot. I learned that in just three days Americans spend more on Starbucks then the National Cancer Institute spends on pediatric cancer research. I learned that tumors like Liv’s have a 0 percent survival rate. And there is much less support then you think for pediatric cancer families. I shared some of those things with Liv and she wanted to do something about it.
The summer she was fighting she organized her first fundraiser and Liv like a Unicorn was born. At that event she raised over $10,000 to help fun the clinical trial she was apart of. She had been doing really well that summer and then the rug was pulled out from under us once again. Her cancer had spread, it was now throughout her brain and central nervous system. We were admitted to NYU under hospice care. Six weeks later, on November 6th 2019 which was almost 9 months to the day our of her diagnosis my daughter died in my arms. We gathered our things and prepared to go home without our daughter.
When we handed in our parking ticket at the hospital we were greeted with a $3,000 parking bill. Imagine losing your child and having to worry about paying for a $3,000 bill?
Those are the things that drove me to continue my daughters namesake foundation. The pandemic threw a curve ball at us but we stayed the course. We have three main areas of support. Fist is our financial assistance program. We have helped families throughout New Jersey, many in the towns you work in pay for things like car payments, rent, insurance, food, utilities, and yes hospital parking. During the hospital we adopt as many of our NJ families as we can and fulfill their whole holiday wishlist for all of the kids, groceries and giftcards. In the last quarter of 2023 we were able to grant close to $50,000 in support to families facing pediatric cancer.
Great, so let’s take a few minutes and cover your story. What should folks know about you and what you do?
We have a care kit program called our Unicorn Boxes. The inspiration for this started when Liv was sick. Every Thursday was Chemo night, which came in a hazardous waste bag, it burned her throat and made her feel nauseous instantly. She woke up dreading Thursdays, that was until a friend of mine started dropping off small treats at our door every morning. The script began to flip from dreading the day to being excited to see what treat was left for her. Sometimes it was a small lego set, a lip gloss, whatever it was she was always excited to see. We hope to do the same things for every child enrolled in our program. They receive an introductory box, several packages throughout the year for things such as Halloween, valentine’s day, as well as their birthday. Since the beginning of the year we have 215 kids from 42 states enrolled in this program. We also supply our boxes to hospitals throughout NJ, NY, and PA. We were able to supply over 400 boxes during the first quarter of the year to pediatric oncology departments at major hospitals in NY and NJ. .
We know that real change will come with research and better treatments for pediatric central nervous system tumors, which is now the number one cause of death by disease in children. To date we have funded over half a million dollars in research to top institutions across the country.
As I mother I hope that the work we can do can ease a family’s burden and make it so one day no family will be told to go home and make memories.
Looking back, what do you think were the three qualities, skills, or areas of knowledge that were most impactful in your journey? What advice do you have for folks who are early in their journey in terms of how they can best develop or improve on these?
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. I take all of those lessons and use them to push me through every day, especially the days my grief swallows me whole. I want to be a light to other mothers who are going through what we did, to know that they aren’t alone.
One of our goals is to help like-minded folks with similar goals connect and so before we go we want to ask if you are looking to partner or collab with others – and if so, what would make the ideal collaborator or partner?
We are always looking for people to use their voice to raise awareness. Before Liv was diagnosed I didn’t know that American’s spend more on Starbucks in three days than the NCI spends on pediatric cancer research for the entire year! The NCI only gives 4% of their budget to pediatric cancer, and of that brain tumors (which are now the leading cause of death by disease in kids) get only one percent. Most pediatric cancer research is funded like bereaved family foundations like ours, we are trying to prevent another family going through something similar to what we did. We receive financial assistance requests weekly from families who need help with their bills. 1 in 5 children who receive a new diagnosis of childhood cancer are already living in poverty. And 1 in 4 families report losing more than 40% of their income as a result of treatment-related work disruption. We believe the last thing a family should worry about while trying to save their child is money.
Contact Info:
- Website: https://www.livlikeaunicorn.org/
- Instagram: https://www.instagram.com/livlikeaunicornfoundation
- Facebook: https://www.facebook.com/livlikeaunicorn
