July 2021 – Meet FiFi: A Flyer Who Soars on JOY

Pedal for Purple Playas Foundation (#Pedal4PPF): Sibling Bikes for Kids with Chronic Illness
June 2, 2021
Cindy McDaniel, Welcome to the Board!
July 19, 2021

At 12 years old, FiFi is one mighty big force of JOY packed in a tiny little body. She has multiple health conditions that began at the age of seven. She has lupus, class three lupus nephritis, chronic kidney disease, juvenile arthritis, POTS/dysautonomia, ADHD, and short stature (but cuddling short people is fun). Waking in the morning can be difficult for her. Sometimes she is really sore; it is hard to open her eyes and she is often in pain.

FiFi commented, “When I was diagnosed, I was really into gymnastics and cheerleading. Those were things I loved, but I was told I couldn’t do them anymore. But I discovered other things I love, like dance and piano. I found “real friends” as well, which is great.” A cause for recent celebration was making the cheer team. She is the flyer and proud of it!

FiFi really enjoys being creative. She said, “I love to play piano, guitar, and flute. Also, I love to hang out with my friends, do art and sketch because it helps me relax and calm down. I can get all this pain that I am having down on paper. It helps. I like to crochet a lot and make stuffed animals. I also like to make Make-A-Wish gift boxes…to put smiles on people’s faces.” She also draws on the gift boxes to lift kids’ spirits with a nice surprise on the outside of the box. She likes drawing landscapes like the beach and mountains. She says it is calming. She also draws animals and people; however, she commented, “drawing hands may be the death of me”. She shared, “I like to draw to help the animal shelter and people who have food insecurities or people who are in a tough place. I also draw for autism awareness which is a piece with a rainbow on it and to raise awareness for the Arthritis Foundation and also for people with anxiety and depression.”

She really believes in helping others. Since she was five years old, she has been raising funds and gathering gifts for animal shelters for her birthday. Over the years, she has raised enough money for the adoption fees for 12 animals.

Currently, FiFi is part of the American Heart Association's National Kids Heart Challenge! She does video vignettes called “Cooking with Sophia”. Other organizations that she helps are the Ronald McDonald House, military families through Operation Home Front, and food banks. Then she added, “Oh, I also like helping the Purple Playas. I am crocheting a Purple Puff right now.”  We can’t wait to see her creation!

One very fun project she does is painting rocks to leave for others. She has left her rocks at “Give Kids the Word” in Orlando, at several Ronald McDonald Houses (her family has moved a lot due to military), at hospitals, and other places. She has painted about 400 rocks to date, and it’s just to put a smile on people’s faces.

She would advise other kids that even though it may be hard at times and you might get in a dark place, it will always get better and people will be by your side.   When she was first diagnosed, she closed up and wouldn’t talk to people. FiFi wrapped up our discussion by saying, “There are always people to talk to and I want people to know you don’t need to feel like you are by yourself…There is always going to be somebody there for you, but you have to talk about it.”

Links to stories about FiFi:

"Cooking with Sophia" video for the American Heart Association's National Kids Heart Challenge.

FiFi is on the American Heart Association's National Kids Heart Challenge page!

FiFi and her mom sing “Imagine Life without JA” (PPF does not own the rights to this music)

The Kids Heart Challenge “private group” is a place for educators to exchange inspiration. Here, you can ask questions, get answers, share activity ideas, and discover insider information about the new Kids Heart Challenge! Click here to join.


Do you know an amazing kid with chronic illness who gives back to the community? You can nominate them for our Chronically Caring Kids monthly stories. Just email us at [email protected]


Comments are closed.