In Memory of Orli

I hadn't planned to reach out to my coworkers or my LinkedIn network about this very personal story. I'm a fairly private person and not one to mix these worlds however so many people have suggested we broaden the circle. Our daughter Orli is 14. She’s a basketball player, dancer and dog lover who has been fighting an aggressive form of rare liver cancer since November 2019. Over the last three years, she's spent well over 150 nights in the hospital, recovered from eight surgeries, four courses of chemotherapy and five rounds of radiation therapy. Orli repeatedly has shocked her doctors with her resilience and tenacity.

This experience has changed our family and shaped the way we view our goals both personally and professionally. Orli's mom captured this best in this OpEd - I don't need my life to be remarkable.

And Orli's POV is also captured here too in an Instagram live conversation- What’s it like to be a teen in covid cancer care?

And in that light, we are fighting to regain some of the basic things we used to take for granted - going to the movies, taking a walk, eating together as a family, etc. We created this targeted gofundme campaign in the aftermath of a New Year's Eve medical emergency. We are asking for your help to give Orli the chance to prove her doctors wrong one more time.

Just after midnight on January 1st, 2023, Orli was rushed to Children's National Medical Center in Washington, DC suffering from what we would later learn to be septic shock and MRSA. She spent the following 19 days in the hospital. The first days were spent overcoming the infection in the intensive care unit. But just as Orli turned one corner, another crisis hit: she began losing feeling in her legs on the eve of her 14th birthday. That night she was rushed for a series of scans. The cancer in her body had taken up residence in her vertebrae and compressed her spinal cord. Orli spent her birthday with yet another dire reality - short of a miracle, she would likely not be able to walk again. The doctors were able to start radiation therapy immediately, to improve her chances. Meanwhile, we finally brought her home on January 19th to a new world: wheelchairs, specialized beds, ramps, and round-the-clock home health aides. For Orli that return came with a ferocious desire to relearn and retrain her body to do things most of us take for granted - walking.

Orli refuses to accept this fate.

As her parents, we have done everything we could think of over the last three-plus years to give Orli every chance to not only survive but regain her sense of normalcy and give (both Orli and her sister) their childhoods back. We've traveled and consulted with expert doctors across the US, we moved our family to Boston for a liver transplant and we sought out experimental treatments. In doing so we've exhausted our savings and taken out home equity loans and leaned heavily on the support of many communities.

It is not easy or comfortable to ask friends, strangers and now today, curent colleagues and my professional LinkedIn circle, for donations. I don’t like it but we often do things for our children/families that are uncomfortable. Now we need to get this community engaged in Orli’s comeback in a big way. So here goes:

Each and every day we are spending $450 out of pocket for home health aides to help Orli do basic things she used to do for herself now that she cannot get out of bed, and needs help to relearn even to sit unassisted. To assist her recovery, we are also spending $500 per week for an oncology-trained physical therapist to work with Orli. We’ve also spent thousands of dollars to reorganize our home, rent a WAV vehicle and build wheelchair access to allow her to escape her room and join the family at the dining room table once again.

These expenses are not covered by our employer-health care coverage because Orli is a child and not an adult. In a twist of the insurance logic - home health aides aren’t a benefit, even for paralyzed kid. Had she been my parent and not my child, most of this eye-watering expense would have been covered.

I am building this fundraiser to cover the cost of home health aides and the weekly cost of the physical therapist for three months. We’re doing this to support Orli’s goal to walk again, regain some independence and a bit of normal teenage life.

Today, the physical therapist was shocked by Orli’s progress over the last 48 hours. Let’s help this kid once again overcome huge adversity and prove her doctors wrong in the best possible way.

Those I work closest with have known about this challenge and have been amazing. Now we need to expand the circle. Thank you for your time, prayers and support.