Real Mom. Real Talk. Real Hustle

Years ago when we lived in Charlotte, NC, I was introduced to this remarkable woman, Mara Campolungo. It was then, that I would find the most impactful and meaningful charity to date. Mara co-founded the charity, The Sandbox, one that served families with children with life altering, rare, cancer or terminal diagnoses. What made this so special, amongst many reasons, was that each families care & action plan were personally individualized to meet each family where they were at. Care could mean a simple hug, bringing essentials to the family for an unknown length of a hospital stay, delivering meals, providing the parents with some self care time, having on hand professional resources, planning extravagant events & more. What I witnessed as a leadership board member, volunteer and supporter, was time after time, were the most impactful, generous and supportive care anyone could ask for.

To give you a look into how big The Sandbox does things, let’s talk about the big events we’ve seen over the years. Pre-Covid, the charity put on a yearly Prom for all the Sandbox family to be a part of. It would be a night of glam, paparazzi, red carpet, limo rides, dancing and most importantly, a night to celebrate life and the joys within the community. It’s difficult to really put into words how incredible this event was year after year, only leveling up each time. The energy was electric & each Sandbox family felt like a true star!

Other big events were a big gold tournament where parents of Sandbox families would join in, businesses would join and sponsor. A full day of fun while pouring into the Sandbox families and the community giving back in big ways. Personally, my husband and I would host a yearly FUN-draising Birthday Party that raised funds for The Sandbox. It was such a fun way to celebrate our (same day) birthdays and give back!

But wait, there’s even more. The Sandbox would also do things like rally a private plane to get a family up to Pennsylvania so their child could receive life saving care. The Sandbox would send cupcake deliveries to family during Covid to remind each family that they are loved and that we were there. Small acts to big acts of service never faltered. Post Covid, things looked different and we had to be very careful as we recognized many families were Immunocompromised. Events shifted but the mission stayed the same.

Last year, Cameron and I went on a Family Reunion trip to Charlotte, NC to spend the evening on a boat (and if you ask Cam, it is called a ‘House Boat’) alongside Sandbox families. It was so great seeing everyone since we’ve moved from the area and to find a new and fun way to be together, celebrate, spread joy and foster the idea to always believe.

Among all of these incredible, impactful and meaningful movements within The Sandbox, they do EVEN more. While serving families who have children experiencing a diagnosis that’s rare, life altering, cancer or terminal; that also means that from time to time we lose a Sandbox member. It’s never something any of us wants to experience but having The Sandbox by each family’s side is what I would consider the most impactful part of the charity.

I have tried multiple times to put into words what it means to be a Hero family but could not do it justice. Instead, I dug deep into Mara & my friendship on facebook and found these words that Mara put out into the world on November 5, 2018: “A hero is a person who is admired for their courage, bravery and special achievements. For us in The Sandbox, a hero is every child who has bravely battled cancer or another life-altering illness, who now is at peace. Honoring these amazing children who have gone before us is something that inspires and motivates us every day. We love these children and families so much.”

Mara and her adoring husband, Neil, gave me a visit in Charleston a couple weeks ago and presented me with an idea that they have been working up for this year. The focus would be on our Hero families and spreading joy while bringing community together while honoring each Hero. My first mission: Thomas.

Thomas was born & diagnosed with Vater Syndrome and Moyamoya Disease. This would ultimately affect his heart, kidneys, bones, gastrointestinal system and brain. Through his short 20 years, he would have 40 procedures. A fighter and an absolute gem, Thomas was the one spreading joy and sharing his radiant smile. You would always find him getting the party started, being the first one out on the dance floor and bringing everyone together.

Thomas’ Mom, Alicia, wrote a lovely piece about him and his experience with The Sandbox. I wanted to share a small part of that to give you an idea of how it impacted this one family: “It was so special to Thomas – he loved dressing up and having the spotlight shine on him, and someone saying you’re not different, you’re just a kid, but you are so very special. It at times gave him purpose he knew he had to get stronger, or feel better because prom was coming. It was also the little thoughtful things household goods, surprise totes of bottled water on the porch when we came home. Tickets to local attractions. The Biker group that came to our hom, and prayed with us on our front lawn. Then took Thomas for a motorcycle ride.”

This week, to celebrate and honor Thomas, we hosted a Play Date at the Park Circle Playground. What’s very special about this playground is that it is the largest inclusive playground in the United States. At this play date, we involved Megan’s Cookie Jar to create some cookies and cupcakes for us to hand out and share joy with others.

We met up with friends and made new friends. We met this beautiful family who grew up in Charlotte and we shared Thomas’ story. They confirmed that we spread joy to them in big ways. Small gestures, big impact.

After our event, we went over to a Hachiya Ramen for dinner. We had a few cookies and cupcakes leftover from the event. Cam insisted we continue spreading joy there. Of course, we agreed! We came across a good friend, Erin who runs the erin_funfoodie Instagram account. We shared JOY cookies with Erin and the entire staff at the restaurant. It’s safe to say that many ended the day joyful.

For those who got to experience joy with us, thank you.

I’d like to end this blog post with a tiny challenge: Find ways to lead with joy this weekend & report back. What small ways can you impact others in honor of Thomas?

Always Believing,
Katie O.