We caught up with the brilliant and insightful Nikki McCarthy a few weeks ago and have shared our conversation below.
Nikki, looking forward to hearing all of your stories today. Let’s start with the story of your mission. What should we know?
At Sam’s Fans we are dedicated to supporting and enhancing music and art therapy programs that serve seriously ill children and their families. Samantha Jane is the oldest and only daughter born to Nikki and Dan McCarthy. At the age of six she was diagnosed with Fanconi Anemia, a rare genetic blood disease that leads to bone marrow failure. The McCarthys never let Sam’s illness define her nor their family and Sam lived a life that was full of friends, fun, sports and most things a girl her age would love to do. The only thing that was different was that Sam was managing a very serious illness. As with most things, Sam managed it with grace and strength and did not let it get in her way. When she was 10 and just finishing fourth grade, the McCarthys were told it was time for Sam to undergo a bone marrow transplant.
With grit, strength, positivity and toughness, Sam fought valiantly for the next 14 months until there was nothing left to give.
Losing Sam on October 15, 2009 was the worst day imaginable for Nikki and Dan and their three young sons. It would have been easy to fold up the tent and give in, but Nikki and Dan had asked so much of Sam and they knew that giving up would not have been honoring her life nor the struggles she endured. Not only would giving up be a disservice to Sam, but it would be unfair to the three boys that brightened Nikki and Dan’s dark days.
After five years of continuing to support research for a disease that took their daughter from them, Nikki and Dan decided to focus their support and energy toward something that brought Sam so much joy. The happy memories they had of Sam’s time in the hospital with her music and art therapists were a clear answer.
When nothing else could heal her sick and worn out body, music and art were there to heal Sam’s soul. Sam’s toughest times were made a bit better by listening to her favorite artists or sketching in her journal. Sam could find her voice through songwriting, listening to music or drawing and she could escape to different places other than a hospital bed by creating art and music. One of the most cherished gifts Sam’s family has to this day is a piece of music recorded for her mom of Sam singing one of her favorite songs.
Since its inception in May 2015, Sam’s Fans has provided countless hours of music and art therapy to seriously ill children and their families in hospitals all over Ohio and SW Florida. The work that Sam’s Fans supports is incredibly powerful and there are so many patients like Sam feeling the same feelings of hope, comfort and joy brought on by music and art therapy. The families of these kids are feeling those moments, too, because every parent of a sick child knows that when their child feels better, they heal better.
Nikki, before we move on to more of these sorts of questions, can you take some time to bring our readers up to speed on you and what you do?
As the Founder and Executive Director of Sam’s Fans, I have the honor of being Sam’s mom. March 15, 1998, was one of the best days of my entire life when Sam made me a mom for the first time. She was one challenging baby girl that grew up to be an amazing young lady.
Diagnosed with a rare disease at the age of seven, Sam made it her mission to make the most of her situation and do whatever she could to help kids like her. Research was incredibly important, and so was giving back, and she had the biggest heart of any young person I have known. Whether it was giving some of her Christmas money at church or her extra blood for research for Fanconi Anemia, she would do it without hesitation.
October 15, 2009, was the worst day of my life when Sam passed away. It has been our mission as a family and me as her mom to continue to live the life Sam would have lived and do the things she was passionate about. Each day we had with her was a gift, and while she left us much too soon, it is important to move forward with her in our lives each day. The daily work we do at Sam’s Fans gives us the chance to provide happiness and comfort to kids like her and affords us the opportunity to keep her memory alive and create her lifelong legacy. Sam is the guiding force behind our work, not just in name but also our vision and values at Sam’s Fans.
Can you share a story from your journey that illustrates your resilience?
I think the story of losing a child, getting out of bed each day, and eventually launching and growing a non-profit is a story of resilience! I don’t know that there is anything more difficult to overcome than the loss of a child. It is not the way of life. To watch your child struggle and not be able to make them feel better is incredibly difficult. As parents, we lost our child, but Sam also had three younger brothers who lost a sister. We were determined not to cause them more suffering by having their family unit fall apart. It was the promise to Sam to care for her brothers that we were determined to keep. At the time, they were nine, six and two years old. There was no way not to get up each day and be the mom they needed. I encouraged Sam daily to do what she needed to do to heal and get better, and I couldn’t ask her to do something I would not do myself. It didn’t seem fair.
Each day with my sons is a gift, and they have been as challenging as growing boys can be, but we have watched them grow into good humans so far! They are now 23, 20, and 16, and continue to make me proud to be theri mom. Each of them has dealt with the loss of their sister in their own ways, but letting them process and work through their grief has taught me how to deal with mine. I would never have made it without them. We all live life with a hole in our hearts and it will never go away. Some days, it is bigger than others, but most of the time, it is manageable.
My work at Sam’s Fans is what gives me a purpose and Sam’s life purpose. Eleven years is not long enough and so having a way to have Sam in my life every day is a gift. I wish it were her doing this work, but instead, it is me, and if that is what it takes and how I will move forward, then that is how I will do it.
When I have the opportunity to meet families and hear them tell their stories of how Sam’s Fans and music or art therapy have positively impacted them, it makes me very proud. No longer is it just mine and Sam’s story; it is the story of Ben, Natasha, David, and Alea, who keep working each day with the help of their therapists to feel better and cope with the adversity of living with a serious illness. I don’t have a choice but to keep doing my best so that they can get the best care they need to heal, thrive, and have hope for their futures.
Any advice for growing your clientele? What’s been most effective for you?
For me, my clientele are my donors. We started with mostly our friends and family as our supporters. I would say our growth has been very “grassroots.” It started with me telling my story, which is very compelling and personal. When people respond and make a donation, it is really important for me to say thank you and tell them how much it means to me. I take it very personally, so those thank yous need to be very personal for me, too. As the donor base grows, it makes it hard to make meaningful contact, but I still really love that part of the work.
The best way to say thank you and grow our donor base is through stories! Music and Art therapy are very personal and private sessions. Being able to share those stories makes the most difference in our growth. Most folks don’t know what music and art therapy are unless you know someone or have had an experience with it. It is more than just someone playing music for a patient or doing crafts together. It is the evidence-based practice of using music or art interventions to achieve very specific outcomes. Because our work is based in pediatric hospitals, you can’t just go in and watch it happen. Being able to share and bring that experience to a donor through a story, video, testimonial, or photo is as close to “being in the room” as possible.
We also recently started to collect data on the number of patients, the modalities used in sessions, and other information to build a case for support and growth. The fact that we can share hard data in numbers, as well as anecdotal information, has been a huge part of our growth in the last five years. Because we have partner hospitals all over that state, we can then share that date in the specific parts of the state we serve! Our hope is to grow that data and become a leader and thought partner in the Music and Art Therapy Community.
Contact Info:
- Website: www.samsfans.org
- Instagram: @samsfans15
- Facebook: https://www.facebook.com/samsfans15
- Linkedin: https://www.linkedin.com/company/24987092/admin/feed/posts/
- Youtube: https://www.youtube.com/channel/UCgvSmsUxgtq9ojlkDhgl5YQ
Image Credits
first photo: Kismet Visuals