Cancer… let’s be real, it SUCKS! And Shelley LoRusso and her family have had to go through something that no person and parent should ever have to… losing their child to this terrible disease at the young age of 12. Shelley’s daughter Olivia was diagnosed with Acute Myeloid Leukemia (AML) at the age of 11, and even though she went through a series of treatments, including chemotherapy and a bone marrow transplant (her twin sister Sabrina was her donor), after 15 months of battling Leukemia, Olivia passed away on April 16, 2017.
Since her passing, Shelley and her family have started the Olivia Hope Foundation to honor her daughter’s dying wish to fight for a better world for kids with cancer. The Levity Ball sat down for a heartfelt conversation with Shelley to learn more and how us here in New York can help…
1. Your daughter Olivia passed away a couple years ago due to Acute Myeloid Leukemia (AML) at the age of 12. Can you tell us, for our readers who may not know, what AML exactly is?
Acute Myeloid Leukemia most commonly referred to as “AML” is one of the more aggressive leukemias. It starts in the bone marrow with the rapid growth of abnormal white blood cells that interfere with the production of normal blood cells. Unlike normal blood cells, leukemia cells don’t die when they should, causing the cells to spill over into the bloodstream. AML accounts for less than ¼ of all leukemias in children, however it is the deadliest. It is one of the childhood cancers with the poorest prognosis, with brutal and dangerous treatment options.
2. Since her passing, your family has started the Olivia Hope Foundation in her honor. What is the mission of your non-profit?
The idea for Olivia Hope Foundation actually came from Olivia herself. One night while in the hospital, we were getting ready to go to bed Olivia said to me, “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. The mission of the Olivia Hope Foundation is to fund research aimed at discovering targeted therapies, which have fewer caustic effects on children, and to improve the quality of life for all children and families suffering from childhood cancer. Ultimately, we dream of helping to find a cure and ending the impact of this horrible and deadly disease.
3. Olivia’s twin sister Sabrina was one of her donors during her treatment, and now runs a program through your foundation called Liv’s Sibs with your other daughter Gianna. Tell us more about what they are doing through this initiative?
Gianna and Sabrina were very connected to Olivia while she was battling cancer. They talked every day and even moved down to Tennessee with us while Olivia received treatment there. With that said, having a sibling with cancer and watching that sibling suffer and (in most cases) pass away is extremely traumatizing for children. Due to the nature of the disease, parents need to put all hands on deck towards the child with cancer. 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 created the Liv’s Sibs program to recognize the siblings of children with cancer build one-on-one relationships with them. The girls keep in touch with the siblings on a regular basis, often FaceTiming with them or communicating via text. They talk about regular “kid” stuff and also about their experiences with having a sibling with cancer. They’ll also send the siblings care packages with the things they love. While a small gesture, this program has helped put a smile on the face of children who feel like they don’t have a place to turn.
4. What are some ways people can – like here in New York – get involved or donate to the Olivia Hope Foundation?
There are lots of ways to get involved and we encourage people to join us in any capacity. We are always looking for new supporters, donors and partners.
We accept volunteer applications through our website (oliviahope.org/volunteer). We know that people have strengths in different areas, so we leave an open form on the application where people can propose ways that they can help out.
Each spring we host the Evening of Hope, which is a gala that commemorates the life of Olivia and all children with cancer. We have special presentations, auctions, dinner, drinks and dancing. This year’s event will be on May 1 at the Crest Hollow Country Club in Woodbury, Long Island. We invite everyone to attend either as a guest or a corporate sponsor (oliviahope.org/events).
Next, we want to give young people a voice and make them a part of this change. We see a huge opportunity to activate young people across the world to spread awareness, raise money and advocate for childhood cancer. The Olivia Hope Foundation will be launching a youth advocacy program in 2020 that provides the tools and information to empower more young people to get involved. We encourage young volunteers to sign up for this program through our website.
People can also follow us on our social pages (Instagram, Facebook & Twitter). Here, we always share stories of our #OliviaHopeHeroes, children who are either currently battling cancer or those who are in remission. We encourage people to join in showing support to these children in our social channels. This is also a place to find the most up to date information on our events and volunteer opportunities.
5. As a mother who has unfortunately gone through this, what advice or words of wisdom would you tell others who may be going through similar things?
My heart breaks for others facing childhood cancer and I wish I could give everyone a hug and say it’s going to be okay. Unfortunately, that’s not the reality with childhood cancer. My advice is 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. Trying to take everything on yourself is going to land you in a very dark place. I do believe that people are intrinsically good and that there are people who are there to catch you when you feel like falling.
6. What is your ultimate hope for the Olivia Hope Foundation moving forward?
My hope for the Olivia Hope Foundation is that our impact continues to grow. We are a grassroots organization, but we are extremely nimble and focused. Ultimately, I dream of helping to find a cure and ending this horrible, deadly disease. Obviously, I can’t bring Olivia back but if her foundation, her wish, is able to help another child, then I know she would be happy.
For more on the foundation, visit: https://oliviahope.org