By Erin Pedrini
Web Production Assistant
After Natalie was diagnosed with high-risk Acute Lymphoblastic Leukemia, Andrea said that she came across the documentary The Truth 365 (an initiative of the Arms Wide Open Childhood Cancer Foundation) which talks about how the funding for childhood cancer is abysmal. Andrea said that out of the National Cancer Institute’s allocated funds for cancer research they only give 4 percent to childhood cancer research and 96 percent goes to adult cancers. She said that she started learning whatever she could about childhood cancer research.
“Once I started hearing these facts, I was like this is wrong and we need to do something about this. I started joining different organizations for childhood cancer. That’s when I had the idea in April 2013 to put up a picture of Natalie and I on Facebook with us holding a sign that said ‘Will you donate a dollar to childhood cancer research?’ Our goal was to raise $50,000 by Natalie’s fourth birthday on Sept. 28, 2013 and we ended up raising $110,000,” said Andrea.
Andrea said that during that first fundraiser, her family received cards and notes from people all around the country and there were people who even held their own fundraisers and contributed the funds to Andrea’s goal. She said that it was amazing to see the support from so many people who did not even know the family.
There are 12 major forms of childhood cancer, said Andrea. “Natalie’s cancer is the childhood cancer that they know the most about. The treatment was passed down from adults so a lot of the kids survive cancer but even when I child survives their cancer, often times, even years later, these same kids face significant medical problems or can even develop secondary cancers as a result of their original chemo treatments. Sometimes you’ll read about a child who survived their cancer, only to end up dying from the chemotherapy treatment breaking down their little bodies. No one really knows that,” said Andrea.
The reason Andrea chose to donate to The Truth 365 is because she said every penny donated goes toward childhood cancer research. Last year, Andrea chose for the money to go toward research for Acute Myeloid Leukemia, after her friend had lost her son to AML. The Truth 365 then will reach out to the donor with the top 10 trials and the donor can choose the trials to donate toward. She said that the $110,00 raised last year helped fund six trials.
“If the trials are successful, it is a piece that will lead us to a cure. I was even able to post on our Facebook page what trials were chosen to be funded, so people could see where their donations went,” said Andrea.
This year, Andrea started fundraising in April and has a goal of raising $150,000 by Sept. 28, Natalie’s fifth birthday. So far, $83,000 has been raised. Again, 100 percent of all monies raised will be going towards childhood cancer research.
“I will advocate for the rest of my life but I will feel good if I can reach my goal of raising $100,000 for every childhood cancer,” said Andrea. She said that every year, she plans to do fundraising for each of the 12 forms of childhood cancer and raise $100,000 for each type of cancer.
“For me personally, I always tell people that I feel as though it [advocating and fundraising] is the only control I have against cancer. I can’t control what happens to Natalie’s body. I can’t control if the cancer comes back and it is the most helpless feeling as a parent to watch your child in pain and watch your child fight for their life. So for me the advocating and the fundraising is like me with my gloves on. I feel like it is the only way that I can fight back in addition to being there for my daughter,” said Andrea.
Andrea said that she has too many friends who have lost their children and a lot of them who are in the fight do not have the luxury of knowing if their child is going to make it or not. She said that they don’t know the future and they can’t fight like she is.
“I feel like it is also my responsibility as a parent to help my fellow parents and do this for them in a sense. Once you enter the childhood cancer community, it’s really difficult to articulate, but it’s like all the kids become your kid. I can’t tell you how many phenomenal people I have met via Natalie’s Facebook page. Some of them I have never talked to on the phone or met in person and yet I feel more bonded and closer with these parents than I do with friends I have had my whole life. I think, for me, that is what it is. I couldn’t just sit there and watch Natalie go through everything. I felt so helpless and I had to fight back. It was the only thing that made me feel like I had a little power in the situation,” said Andrea.
Natalie is currently in treatment and currently in remission. She said that Natalie will be done with all her chemotherapy in November, two and a half years after she was diagnosed. Andrea said that Natalie will continue to have her blood count monitored every month for six months. She said that Natalie will be monitored for five years and after five years she would be considered cured.
To reach this year’s fundraising goal, the Gorsegner family is hosting a fundraiser at McLoone’s Pier House in Long Branch on Thursday, Sept. 4 from 6 to 10 p.m. Tickets are $100 in advance and $120 at the door. The ticket includes an open bar, hors d’oeuvres, food stations and dessert. There will also be live music by recently signed singer-songwriter Mikey Wax. There will also be raffles and free valet parking. Tickets can be purchased here or at the door. To donate to the fundraising goal, donations can be made here or can be sent to P.O. Box 4064, Middletown, NJ 07748 c/o: Infinite Love for Natalie Grace (Andrea Verdone Gorsegner.)