Stephanie Gives: Raising Rett Syndrome Awareness Through Friendship

“The Best Girlfriends Ever” is Stephanie Gives’ latest book centers around Tiffanie, a young girl with Rett Syndrome, and her best friends, the “Devine Sisters” that accompany Tiffanie on her summer adventure and create everlasting memories. Their journey encourages acceptance as well as highlighting the power of friendship and empowering other girls that helps children achieve limitless possibilities. This inspiring story would not be possible without the help of Gives’ artistic abilities, lifetime friends, and her own little heroine-the late Tiffanie Nina Simone Hayes.

Meet the Author: Stephanie Gives

To renowned museum paintings, to street graffiti, to even her own seamstress mother, growing up in the Bronx ignited Gives’ talents in the visual arts. Coloring, painting, designing, you name it. If it required a creative mind and a pencil and paper, Stephanie Gives would always be in control of creating her own world. Aside from being a jack of all trades in the arts, Gives currently works as an educator in a pre-school setting where she inspires children on a daily basis. “My overall journey is just relating to children and then having a child with special needs, which really brought it full circle, is pretty much the core of who I am,” says the author. Thanks to her creative talent, Gives combined her passion for children through her self-published book that immortalizes her daughter, Tiffanie, as the main character that speaks out on embracing each other’s differences while also raising awareness on Rett Syndrome.

Behind “The Best Girlfriends Ever” 

Rett Syndrome (RS) is a debilitating neurological disorder that predominantly affects females. It is the leading genetic cause of severe impairment in girls, brought on by a single gene mutation that leads to underproduction of an important brain protein. After giving birth to her daughter at a later age in life, Gives knew birth defects were a high possibility. It wasn’t until signs of Tiffanie’s motor skills slowly disintegrating that led to a blood test by geneticists which diagnosed her with RS at age three. Before her passing at age fourteen, Tiffanie left a large impact on her mother that sparked confidence on her once low self-esteem mother. “She really inspired me [through] little things like her doctor said she would never go to college and I said, ‘Well if she’s not going to college then I will go for her,’…I was doing things I wasn’t supposed to be doing. She just inspired me to be more comfortable with who I was and not what other people expected me to be.”

However, Tiffanie is not alone in her book as her mother includes her own special memories of her friends in her book. Reflecting on her own childhood friends that have bonded together for over thirty years, Gives decided for her book to center around Tiffanie and her girlfriends’ long-lasting friendship and teach girls to provide endless support to each other that helps nourish companionship for decades. “I had all these pictures of Tiffanie and her girlfriends going on different trips and I had pictures of myself and my girlfriends as we go on different trips every year and I took some of the pictures and I just thought of illustrating from them. So a lot of the pictures in the book are from trips that Tiffanie had taken and also some trips that I had taken from my girlfriends and I had just compiled them and I just started writing and two days later I had a story.”

Advice to Parents and Children 

A unique experience between mother and daughter but still a lesson that can be learned by all. The best piece of advice Gives received was from Tiffanie’s pediatrician that parents of special needs children—especially with limited life spans—could also learn as well. “‘Tiffanie’s here. And she’s alive and that means you gotta keep living.’ You know the cards that were dealt that’s what you have to deal with and you have to find a way to find some type of joy.” While their children may be limited from their illness and need assistance, Gives encourages them to explore the world on their own terms. “Tiffanie enjoyed being around people and she enjoyed the outdoors and that’s what we did and she was like a little social butterfly,” Gives shares. “You just gotta go out there and gotta enjoy life and make sure your child enjoys it too. They’re there for a reason.” While many families empathize with Gives’ personal experience, “The Best Girlfriends Ever” also intends to educate children unfamiliar with Rett Syndrome and invite them to accept other children despite their differences. Once children learn to embrace each other’s special characteristics, that’s where the real fun can begin. “Just teach your children not to be afraid of those who are different. Once they realized that Tiffanie was just like them in so many ways, they didn’t care about anything—that wheelchair was invisible.”

Raising Rett Syndrome Awareness 

Gives also has plans to bring her children’s book to life with future projects, such as her “Best Girlfriends Ever Honors Awards” on October 27 in Columbia, SC to recognize women who give back to their communities just as how women poured their efforts to support her dreams. She is also the founder of the Tiffanie Nina Simone Foundation and aims to increase a significant amount of funds for her cause through creating and selling her self-made merchandise that raises awareness of RS and connecting with other individuals who share the same vision. But a larger goal for the advocate and talented artist is to bring her book to life on stage or on screen through an adaptation that presents each child’s own quirks, flaws and imperfections that empowers them in finding their friends for life. A big dream that requires even bigger funds, but nothing seems impossible for Stephanie Gives as she always seems to find blessings in the most unexpected ways.