Parker Lentini, who was diagnosed with juvenile arthritis and other autoimmune conditions, knows how lonely it can be dealing with a chronic illness as a kid, from time spent in the hospital to gaining weight from medications. This became the inspiration for the nonprofit the 20-year-old founded with his mom — the Purple Playas Foundation.
The Purple Playas Foundation supports people under the age of 18 dealing with chronic illness. So far the organization partnered with children’s hospitals in the Lentini’s home state of Florida, as well as Cincinnati Children’s Hospital in Ohio. With a special focus on building kids’ social-emotional support, Lentini wants to provide access to resources for all kids dealing with chronic illness and their families in one place.
To learn more, we spoke with Parker, Purple Playas Foundation’s Vice President, and his mom, CEO/President Rochelle Lentini. They shared what inspired them to start the Purple Playas Foundation just over a year ago, their goals, the importance of focusing on mental health in the chronic illness community and more.
Here’s what they told us:
Editor’s note: This interview has been edited for content and clarity.
What are some of the biggest reasons that you wanted to turn your experiences with chronic illness into a nonprofit to help others?
Parker: When I was first diagnosed, I thought I was the only one going through this. And when I was 10 or 11 years old, we went to a juvenile arthritis conference in Washington, D.C., and I got to meet so many other kids and families with juvenile arthritis. I realized that there were so many other people going through what I was going through, and it opened up my eyes to see that this is just so much bigger than I am. It was really cool for me to be able to connect with all the other families, but it was also pretty hard for me to see this because it hurt to see that I wasn’t the only one going through this.
I decided that I wanted to do something. I wanted to be that change out there. It started out small. We decided that we were going to send gas cards to our hospitals to help families that were less fortunate because we found out that there were some families that we knew that were having to forego their electric bill and their cable bill because the hospitals that they needed to go to were so far away. Then slowly it built up into this is wonderful foundation and eventually, we want to do something bigger.
Can you walk me through what some of your bigger goals are? What are some of the big initiatives on the table right now?
Parker: So we have three goals for our foundation. The first goal is open-ended. It’s just anything that puts a smile on a kid’s face. It’s purposely open-ended, actually, because that way we can do multiple things. So that is the gas card, donating to a camp called Camp Boggy Creek, which is a camp for kids with serious illnesses that I went to, and that a lot of kids go to.
Just delivered 24 gas cards to St. Joseph's Pediatric Complex Chronic Care Clinic to help ease the burden of medical expenses. pic.twitter.com/2zt1cK3q2e
— PurplePlayasFoundation (@PurplePlayasFdn) January 18, 2019
Another goal that we have is social-emotional support. That is very important. My mom’s background is in the social-emotional field, so she’s taken her background from that and implemented it into this because when I was growing up, and I was having struggles with coping. We found out that all these things that were field-tested in her field actually worked for the chronic illness field. So we have put together social-emotional support, and we made actually a Purple Playas coping kit, that is going out to hospitals across the state of Florida. We have 1,000 of them going out right now. So that’s our second goal.
Our third goal, which is our big goal, is funding fellowships for critical shortage areas. Right now we have a fellowship being funded for pediatric rheumatology at UF Health Shands Hospital in Gainesville for 2020, in partnership with the Arthritis Foundation. That’s our big goal. We want to fund some fellowships for critical shortage areas, meaning they would be areas where people are no longer really going into those medical fields.
The social-emotional part of managing a chronic illness is so important because, as you mentioned, that seems to be missing when we talk about chronic illness, especially for kids.
Rochelle: It’s interesting you said that because I’m an early childhood educator, so my area is primarily birth through about age eight. There’s been a lot of research on disability, and the use of these materials with young children, but when we were in the hospital, I just naturally would use techniques and Child Life was like, “Oh, my gosh, this is really cool. Could I have a copy of that?” Or, “Could I use that?”
But the thing that got me the most was in the infusion room. You would see families and hear kids struggling so much and for HIPAA and privacy, you felt like you couldn’t really do or say anything. And yet I knew there were things that families could use or try. It’s part of the reason why I wanted to do this because, for Parker, it was cute — he could get away with going over to a kid and start helping them because young children just need someone to show you [social-emotional coping skills] and sometimes the adults don’t even know.
I’m interested to know more about your Purple Puff character. What inspired his creation?
Parker: When I was in middle school, I gained a lot of weight. I used to be a really skinny kid and then was put on very high doses of steroids. The kids in middle school, they see a kid in a wheelchair that weighs a lot and they assume the reason I’m in a wheelchair is because I’m fat. I was bullied a lot for that. So I created this character. I wanted him to resemble someone who was overweight, just cuddly, something that you could hug and when you hug him, you just fall into his arms. Of course, I wanted glasses like me. I drew him and then I came up with the motto, “I’m not fat, I’m puffy.” I wanted people to be able to say something like that, because the kids with chronic illnesses, they didn’t do anything to gain this weight, it’s the meds that are making them gain the weight.
1500 Purple Puffs have arrived! We are so excited to get these cute little buddies into the loving arms of children with chronic illness! pic.twitter.com/W1wD9B2zkA
— PurplePlayasFoundation (@PurplePlayasFdn) August 23, 2019
As you grow, what are you hoping the reach of the Purple Playas Foundation is eventually?
Parker: I just would like to see it across the state of Florida and all the hospitals.
Rochelle: I dream really big. I want to be in every pediatric hospital clinic and infusion room that deals with children with chronic illness. So I want it nationwide, I even want it internationally. I’m all about getting this into as many kids’ hands as we can.
Our 501c3 status was approved on September 11, 2018. As we approach the 1 year mark, we are very PROUD of what we have begun to accomplish. To celebrate 1 year, on 9/11/19 we will begin spreading even more HOPE, LOVE, and SMILES! Stay tuned… pic.twitter.com/EnoZ163kDl
— PurplePlayasFoundation (@PurplePlayasFdn) September 5, 2019