Shelley LoRusso is the President and Founder of the Olivia Hope Foundation, an organization dedicated to helping out children suffering from cancer and supporting their families. But that isn’t what really defines her; Shelley is a mother who witnessed her 11 year old daughter, Olivia, suffer and eventually pass away from cancer. The Olivia Hope Foundation was founded to honor Olivia’s dying wish of creating a better world for children just like her. Shelley’s eternal love for her daughter is the reason she decided to do everything in her power to bring Olivia’s dying wish to life. Which is why the foundation today has raised hundreds of thousands of dollars.
Where does Shelley come from?
Shelley LoRusso lives in Long Island, New York with her loving husband Rob. Her oldest daughter, Gianna, is 17 years old. Her younger twin daughters, Sabrina and Olivia, would’ve turned 14 together but unfortunately, Olivia died at the young age of 12 from Acute Myeloid Leukemia in April 2017.
Before Olivia was diagnosed with AML, Shelley worked as an aesthetician for a reconstructive surgeon. However, when she heard about Olivia’s diagnosis, she quit her job to be with her daughter. Together, they both spent 15 months battling this disease, going from doctor to doctor and treatment to treatment, but nothing seemed to be working in their favour until eventually, Olivia passed away.
In 2018, Shelley and her family, founded the Olivia Hope Foundation in honor of her daughter. After that, she dedicated her days working on the foundation to help children battling cancer, trying to make their lives better and taking care of her family.
What has The Olivia Hope Foundation accomplished thus far?
Although the foundation was birthed to help out children afflicted with cancer, it has fanned out into other key areas as well; research for better treatments, support for children currently in treatment, support for the siblings of children with cancer and advocacy for change across the major institutions that influence the way things work in this world. In her opinion, the success of the foundation doesn’t just depend on one aspect of funding raised, but by the lives it touches and changes for the better.
During her hardship, she realized that research for childhood cancer is severely underfunded and falls far behind the progress made within other cancers. The sad truth is, while cancer is the number one cause of death by disease in children, only 4 drugs have been approved specifically for use in childhood cancers since 1970. Each day, 43 children are diagnosed with cancer. This leaves children to either die or suffer long term effects of grueling treatments. So the foundation provides funding to high priority research projects, including the Target Pediatric AML work out of Seattle Children’s Hospital and the PedAL initiative. Since 2018, they have granted $200,000 to research projects.
Her and her family have first hand experience at how devastating it can be for the families of cancer patients as well, emotionally, physically and financially. This unfortunate experience is what led them to develop two affiliated programs to support the families; The Warrior Support program and Liv’s Sibs.
The Warrior Support program helps children who are currently receiving cancer treatments, including providing financial assistance to families struggling to pay bills, helping children travel to treatment facilities, and maintaining relationships with patients to provide them with a bit of joy during difficult times. In 2019 they granted over $40,000 to children and families. This funding supported 20 families across 9 states and 4 countries. Aside from the obvious benefit of financial support during tough times, the Warrior Support program also gives families the ability to spend their time and effort where it matters most, on their child’s treatment journey.
Liv’s Sibs is a program that was initiated by Olivia’s siblings Gianna and Sabrina as they both knew what it felt like to have a sister who is in constant pain. Siblings of childhood cancer patients are called the “forgotten children,” often feeling left alone while the family focuses on the sick child. Gianna and Sabrina set out to recognize the siblings through this program by providing one-on-one support and advice. Sometimes the girls Facetime with the siblings of the patient. They hope to make the siblings feel special by getting to know them and their hobbies, and sending care packages of the things they love. While a small gesture, this puts a smile on the face of children who feel like they don’t have a place to turn. The main focus of the program is to provide comfort to the siblings as they need someone to look out for them too in their time of need.
Additionally, they visit Washington, D.C. several times throughout the year to meet with members of Congress. Through this, they aim to educate Congressmen and women and their staffers on the important legislative issues that can make a difference in funding and treatments made available to children with cancer.
Childhood cancer has many layers, and while their efforts are quite the undertaking, she truly believes that they have been able to make an impact towards better outcomes.
Why did she start the foundation and how does she aim to make the world better with it?
According to Shelley, the idea for Olivia Hope Foundation actually came from Olivia herself. One night while in the hospital as they were getting ready to go to bed, Olivia said to her, “Mom, if I got cancer and I was able to help other kids fighting like me, it will have all been worth it.” Olivia envisioned the day when she was cancer free and able to help other kids. So Shelley and her family dedicated themselves to delivering on Olivia’s wish, and she remains their guiding light as they navigate through the ugly world of childhood cancer. The foundation is extremely important to Shelley because it gives her hope. While her daughter was not able to be saved, she hopes that one day other children and their families won’t have to go through what she went through.
They, together as a family, are taking several steps to ensure Olivia Hope Foundation is impactful and makes the world a better place. First and foremost, they want to improve the survival rates for children with cancer. This will be done through better, more targeted treatments brought on by research. They want to try and give all kids a chance to live out a happy and healthy life, like the one they deserve. Next, they hope to give young people a voice and make them a part of this change. They see a huge opportunity to activate young people across the world to spread awareness, raise money and advocate for childhood cancer. With this, their foundation will launch a youth advocacy program in 2020 that provides the tools and information to empower more young people to get involved.
Any advice to other parents going through something similar?
“I have good days and bad days, and I know this will never change. Nothing will erase the pain and suffering Olivia went through and nothing will bring her back. I try to honor Olivia every single day. Helping other families and children through devastating times acts as a band aid for my broken heart. My advice to other parents experiencing something similar would be to lean on people when you need help. This can include allowing yourself to express your emotions to your family members or trusting in your hospital support team. I do believe that people are intrinsically good and that there are people who are there to catch you when you feel like falling.”
What are her hopes for the future of the Olivia Hope Foundation?
She hopes that her and her family’s tireless efforts continue to bear fruit and that the foundation continues to grow and have positive impacts on the lives of the children and their families involved. They are a grassroots organization but they are always focused on their main goal which is to help, as much as they can, to find a cure for this horrible disease that affects not only the patients but their families as well for a long and painful time. Her ultimate dream is to cure cancer, which seems overwhelming and farfetched, but it is a step in the right direction. She knows that she can’t bring Olivia back but she hopes to carry on her daughter’s name and legacy through this foundation.
Does Shelley have any “words of wisdom” that she lives by?
“I constantly remind myself to take one step at a time. I constantly remind myself to “Liv” for HOPEc (Liv is a play on Olivia’s name). I know Olivia would want me to continue on with her wishes. I know I have to live for her and my family. Olivia wanted desperately to survive. She wasn’t given that choice. At the end of her precious 12 years of life she was out of treatment options. It’s easy to get overwhelmed and give up. Taking one step at a time allows me to continue on my path forward, towards a better life for our children.”