Danielle
Pruitt is a typical 4-year-old in many ways. She loves going to school
and seeing her friends, but Mom and Dad are her best friends. She never
met a toy she didn’t like and she’ll spend quiet hours watching the same
movie over and over. She also loves singing along with her favorite
songs. Sometimes independent when Mom tries to help too much and
sometimes a little bossy with her friends in school, Dani has an amazing
zest for life and an awesome sense of humor. She wants to be an engineer
like her dad when she grows up and she dreams of going diving with “Dora
the Explorer” on an ocean adventure. Dad, Frank, is a civil engineer for
CDP Engineers in Lexington and after explaining what kind of work he
does, Dani said, “Oh, I didn’t know you were an engineer, do you get to
drive the train?” She’s surprisingly brilliant. She can count to five in
Spanish and German as well as English and she can count to 100 using
just her two hands like an abacus. “I can also count to whatever number
my dad says,” she boasts. “Can you count to 1,247?” Mom asks. “No,” says
Dani.During a break in the action, Mom, Beth, says, “You know, Dani is just a normal kid however you would measure that. Most times she’s an angel and sometimes she’s a brat but there’s just a tiny part of her that’s not who she is but it’s the part that everyone sees.”
Danni has a disease called Spinal Muscular Atrophy, or SMA.
And there is no cure.
She lies flat on her back in the Pruitt living room and she doesn’t have the strength to move anything but her fingers, her eyes, her eyebrows, and if you look close and listen closer, you can see her lips barely move when she talks and smiles. It’s a struggle just to breathe, let alone talk, but she loves to talk.
According to the Families of SMA Web site (www.fsma.org) Spinal Muscular Atrophy is the number one genetic killer of children under the age of 2. It’s very often fatal. The disease destroys the nerves controlling voluntary muscle movement like those needed for crawling, sitting, walking, head and neck control, and even breathing and swallowing.
The diagnosis of Spinal Muscular Atrophy can be confusing, scary, frustrating and pretty much the whole gamut of emotions for the families involved, so it takes a special team to deal with this opponent. You may have heard the name of Dani’s mom, Beth Pruitt. Beth was hired in 1995 by the University of Kentucky as the first head coach of the Women’s softball program and five years later was voted the 2000 SEC Coach of the Year after winning the SEC East Division championship for UK.
It’s evident that Beth Pruitt is a great coach, but she gave it up in 2004 when Dani was diagnosed with SMA at 8 months. Now she’s coaching a whole different ballgame—her team consists of Dani and husband, Frank, her No. 1 assistant. No one expected Dani to live to be 2 years old, so every day is a victory for the Pruitt team.
“Beth and I were devastated when Dani was diagnosed with this horrible disease, but after we got over the shock, we decided that we would provide Dani with the fullest life and the richest experiences we possibly could,” Frank says. “She doesn’t know she’s handicapped and we never talk about why she’s different than other kids.”
On a recent vacation to Iowa to see Grandma and Grandpa, Dani went to the beach, went fishing and flew a kite. She even baked some chocolate chip cookies. She loves to show off her picture album documenting her great adventures. She’s pretty impressive and very cute.
Frank admits that it’s rougher on Beth than it is on him. In four years, she’s only been away from Dani one day, while he has a regular 8-5 job that gives him a break.
“We have to be structured in our daily lives,” he says. “So we’ve become isolated, but since we never know what the next day will bring or how long Dani with be with us, it’s not a sacrifice or a burden. We’ve learned lessons about life and love that most people will never know. We’re just grateful for each day.”
I asked, “Now that you’re going to be famous, what would you like your fans to know?” Barely able to smile and move her lips she whispers, “That I love them,” and flashed a thumbs up.
For more information about SMA and what you can do to help, call the Families of SMA national toll-free number at 800-886-1762 or visit www.curesma.org.