Today’s FACE of Charlotte was able to take the heartbreaking loss of her daughter and turn it into something positive to help other children suffering from the same debilitating disease. Since founding the Isabella Santos Foundation, Erin Santos has raised over $1 million to help the fight against neuroblastoma. We are honored to introduce today’s FACE of Charlotte, Erin Santos, who tells us how she found the strength to get through and the advice she’d give to someone else going through tough times.
Tell us a little about the Isabella Santos Foundation and how you started it.
My husband and I co-founded the Isabella Santos Foundation in 2007 to help bring awareness and funding to neuroblastoma. Our daughter Isabella was diagnosed with this rare disease at the age of 2, and with a 40% survivor rate, we knew that we had to do something to save her.
How were you able to turn such a tough time into something positive?
Honestly, while Isabella was still with us, it was a great distraction. It made me feel like we were doing something outside of her treatment to help her. People wanted to help, and it was a wonderful way to funnel their intentions into something meaningful. Once she passed away, it became something else entirely. It not only helped in my grieving by allowing me to continue talking about her and remembering all the good times we had together, but it also became about creating a legacy for her. We also became familiar with more and more children who were being diagnosed, and it became about saving them too.
What advice would you give someone else going through a tough time?
I definitely wasn’t ready to jump into the foundation right after she passed away. I had to do it in my own time. I think people think they need to make big decisions quickly when they experience tragedy because they don’t know how much time they should allow themselves. Give it time. It wasn’t until I walked from this path completely, for me to discover that it was something I was meant to do. This path is not for everyone though, so really look inside and determine if you are willing to sacrifice yourself at times for the good of the cause. Also, leaning on people around you is key. Stop telling yourself they are tired of hearing from you. Allow yourself to talk with them without holding back, but then also allow yourself to shake your situation off and have a good time without the feeling of guilt.
What’s something special you would want the world to know about Isabella?
There are two big things that I wish people could know about Isabella. First would be her ability to make everyone she came in contact with feel special. She would crawl right up on a strangers lap or give anyone a hug. It was never about her journey, she just made it a point to touch or connect with people even if it was for a moment. Little did she know she would make a lifelong impact on those people through a simple gesture. The other great thing about her was her ability to take everything she was going through and push through it to enjoy life. I can’t tell you how many times she left the hospital and lived life to the fullest the next day. We even took her to Disney World a couple of days after she recovered from horrible chemo. She may have gotten sick in a trashcan or two, but she ran around and enjoyed every minute of it. She was never going to let the cancer win.
What’s the biggest message you hope people take away from the foundation?
I really want people to know that we aren’t just raising money to give big buckets to large organizations. We spend so much time investigating what it is we want to do to make the biggest impact. We make the people we give money to accountable for the funds. It is important to us to fund treatments that are less toxic and showing big results for these kids, but also available to kids throughout the country. In 2017, we are trying to put more focus on our local Charlotte community by bringing a new and innovative treatment to Levine so our kids don’t have to travel to get the best treatment. Our give back percentage is also very high, which is important to us. I want our supporters to know that their money is going to finding a cure, not to huge overhead costs.
What are your hopes for the foundation in the future?
If we hold true to our mission, someday we will be out of business! But in the meantime, I feel like we still have so much growth to do in the Charlotte community. We haven’t even scratched the surface in areas like SouthPark, Uptown and Lake Norman. If we can raise $1 million with our current reach, imagine if these communities rallied behind us as well? We are also hoping to expand into new cities who believe in this cause. Our first expansion this year will be in Columbus, Ohio, where I’m from. There is an Isabella in every city, so the message is relevant whether you are in Charlotte, Raleigh, Charleston, etc.
What’s the most rewarding part of running such a successful foundation?
Sending out those checks at the end of the year is so rewarding for our team. I’m always amazed at the amount of work that my team puts in day after day. These people work from the moment they wake up till they close their eyes at night. They work on weekends, holidays and vacations – for practically nothing. But at the end of the day, they tell me it’s the best thing they have ever done with their lives. Who wouldn’t want their job to be saving lives? I don’t think there is a better job in the world.
Best piece of advice you’ve ever been given?
Lately I have been told to really put myself out there a little bit more. I feel the weight of the foundation on my shoulders sometimes, and I really have to push myself to step into the spotlight. I have to write that blog that makes me vulnerable or uncomfortable because it has so much meaning to people. I have to send that email or make that phone call that goes against everything in my body because in the end it will make a difference. One of my least favorite things in the world is asking for money or opening my soul to a stranger or speaking in front of a group — but once I do it, I know that lives could be changed from it, and I walk out on that stage. I have to really force myself to step out from behind the rock sometimes. I’m getting better at it.
Is there a mantra or motto that you live by?
“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”
Also, “Beat Cancer. Grow Hair. Live My Dreams.” It was a great shirt that Isabella received when she was first diagnosed. It became everything she stood for.
What are three things you can’t live without, excluding faith, family and friends?
Music. My entire life has a soundtrack.
Running. It makes me feel good and allows me to escape from everything.
Travel. I’m sensing a theme of “escape” here. I would travel every day if I could.
Thank you Erin for opening up about her journey and the Isabella Santos Foundation. Find out how you can help support the foundation here. Also, thank you to Piper Warlick of Piper Warlick Photography for the beautiful pictures.
Read about more inspiring women in Charlotte — check out our FACES archives here.
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