An adorable toddler struck a pose and grinned ear-to-ear during a sweet photo shoot arranged by her loving mother to celebrate the 3-year-old’s first anniversary being cancer free.
A little more than a year ago, Allyson Fuller was given the scare of her life when her then-2-year-old daughter, Anna Grace, was diagnosed with a rare disease that led to the discovery of an undetected tumor. After undergoing surgery to remove the cancer, Anna Grace has had clear scans for 12 months, and to commemorate the occasion, Fuller—along with her friend, Darlene Adams—threw a photo shoot for the 3-year-old, complete with custom T-shirts and balloons.
“She was so excited to be getting her picture taken, she was acting silly the entire time!” Fuller, 25, of LaGrange, Georgia, tells PEOPLE. “She is a typical 3-year-old now, with the sass and all. She is truly strong and brave, and loves to play with her baby dolls, be outside and she is a daddy’s girl, that’s for sure.”
In September 2016, Fuller and her family noticed that Anna Grace was having trouble walking around the house—to the extent she would crumble to the floor and need assistance to get back on her feet.
“We noticed she was stumbling around—she could walk, but every few steps she would just fall down and beg to be picked up,” Fuller recalls. “We thought she just was going through a phase.”
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After taking her to a pediatrician, the family went to Children’s Healthcare of Atlanta Egleston, where doctors conducted an MRI of Anna Grace’s head and spine. She was admitted for a week and then transferred to Children’s Healthcare of Atlanta Scottish Rite Hospital, where a neurologist diagnosed her with opsoclonus-myoclonus syndrome.
“He noticed her eyes and her voice would shake when she would talk,” Fuller says.
OMS is a neurological disorder identified by rapid eye movements, an inability to walk steadily, shock-like muscle spasms in the arms and legs, extreme irritability and difficulty speaking, according to the National Organization for Rare Disorders. Approximately 1 million people are diagnosed with it worldwide.
When doctors performed a second MRI on Anna Grace, they discovered something surprising—a tumor the size of a tangerine on her kidney.
“By this time she could not walk, crawl or even hold herself up. It was like having a tiny infant again, but she was 23 months old,” Fuller says. “If the OMS would have never shown up, we wouldn’t have known about [the tumor] until it spread.”
Anna Grace underwent surgery on October 19, 2016, to remove the tumor from her organ. Fortunately, they were able to remove the cancer in its entirety.
“I was terrified, and I was just wondering why was it her and not me, why this happened and how she could still be so happy,” Fuller says. “She would get frustrated because she knew that she could do things, but her body wouldn’t let her, but yet she was still so happy.”
Doctors prescribed steroids to help with her OMS symptoms, but said that if the medication didn’t work, little Anna Grace would have to have chemotherapy. Though doctors said it would take six months to a year for the steroids to take effect, they miraculously started working quickly, and within a week, Anna Grace was able to walk on her own again. Fuller says doctors were shocked when they went back for their next check-up, and since then, Anna Grace gets routine CT scans every three months to keep track of any reoccurrence.
Fuller hopes her daughter’s story can help raise awareness about OMS and how it can be misdiagnosed.
“I would like to encourage all parents that are going through what I did to not give up and to keep having faith,” she says. “Pediatric cancer sucks, knowing you can’t do anything to help, and they can’t tell us exactly how they’re feeling.”
Today, Anna Grace is living life as a normal 3-year-old, and Fuller couldn’t be more grateful.
“She loves going to follow up with the doctors. She is in preschool now and she loves going to see her friends there,” Fuller says. “The last year has been great.”