This baby girl has 100 seizures an hour. Her mother wants answers — and hope.

Khloe has the sweetest little voice. She babbles nonstop and is quick to laugh, especially if music is playing. But her mom once questioned if she would ever hear Khloe's voice at all. 

Not quite 2 years old, the toddler Khloe is today was almost unimaginable one year ago. Khloe has Aicardi syndrome, a rare disorder that, at its worst, was causing up to 100 seizures an hour. 

For the first year of her life, Khloe was in and out of emergency rooms and hospitals. Though it all, first-time mom Tamanda Richard, 28, was a tireless advocate.

"She really is a miracle baby," Tamanda said. 

Sitting in the family's Jackson home, Tamanda talks about navigating her daughter's diagnosis, treatment and day-to-day care. Her sparkly, purple eyeshadow matches the script on her T-shirt that proclaims, "Epilepsy doesn't come with a manual, it comes with a mother who never gives up."

Never giving up is what led to an eventual diagnosis. Tamanda had never heard of the disorder — there are currently only about 1,000 documented cases in the U.S. and about 4,000 worldwide, according to the Aicardi Syndrome Foundation — and it would take extensive testing to figure out what was wrong with Khloe.

Dr. John Bradford Ingram specializes in pediatric epilepsy and is one of Khloe's physicians. Tamanda and Khloe are an unbeatable duo, he said. 

"One of the best things that a special needs kid can have is a great mom...a strong mother who doesn't give up and is their child's best advocate and never lets complacency enter the conversation," Ingram said.

"She really, really, really has always believed, whatever Khloe's best outcome is going to be, she's going to get her there."

Tamanda said when she was four months pregnant, a sonogram revealed what looked to be a cyst on Khloe's brain. She was told it would likely go away.  At the time, Tamanda said didn't understand the gravity of the situation. 

"I think I took my pregnancy for granted, not knowing that at the drop of a dime she could have been gone," she said. 

On April 17, 2017, Tamanda delivered what she believed to be a healthy baby girl. But then she was told there was a possibility her newborn could begin having seizures.

Khloe had her first seizure when she was just 2 days old.

Steroids were increased but 'nothing helped'

The exact cause wasn't known, Tamanda said, but Khloe was given numerous prescriptions and medications. For a while, her seizures were "under control."

But by the time she was 3 months old, "Khloe was no longer in control." Her body would burst into violent, uncontrollable seizures. At one point, Tamanda said, Khloe was having over 100 seizures an hour. As a result, the baby couldn't sleep or eat.

Emergency room visits became so frequent that the University of Mississippi Medical Center seemed like a second home. 

"I couldn't pick up my phone and call my neighbor and say 'my child is doing this' or ask my mom, 'what is going on, what do I do next?," Tamanda said. "I couldn't do that. I would always have to take her to the hospital."

Steroids were increased, but "nothing helped."

Tamanda pushed for more tests, and Khloe spent a week in the hospital as doctors sought a diagnosis. Tamanda never left her side. 

Will Khloe ever walk or talk?

When the results came back, Tamanda said, doctors told her it was possible her baby would never walk or talk. Khloe wasn't just having seizures. The 3-month-old was diagnosed with Aicardi syndrome.

Occurring almost exclusively in females, the disorder interferes with the formation of the corpus callosum, which is the structure that connects the two sides of the brain. Since the two sides of the brain cannot communicate with one another, many with the disorder can't walk or speak. Developmental delays and brittle bones are common.

Tamanda said, to her knowledge, there are "seven little girls in the world" with Aicardi syndrome who can "speak complete sentences." 

"She's supposed to be like a vegetable," Tamanda said.

Over the next nine months, Khloe's seizures continued.

"She was on eight seizure medications," said Tamanda, recounting the expense of some medications. While Khloe is on Medicaid, she's been denied some prescriptions. 

"When Medicaid says, 'No, I'm not going to pay for this medicine' and the medicine is $900, then that's a big strain," Tamanda said.

Aicardi syndrome diagnosis, then brain surgery

Then, before her first birthday, doctors recommended performing a hemispherectomy, brain surgery where the cerebral hemisphere, or half of the brain, is removed or disabled. Tamanda decided that was the best option for her baby, but she was terrified of the outcome. 

"Not being able to say, 'me and my little girl are going to the nail shop' or 'we're going out for ice cream'...it was really emotional," she said. 

Ingram said Khloe's case "is very complicated."

While the right side of Khloe's brain was healthy and functioning, Ingram said, the left side was constantly seizing. As a result, the left side of her brain was acting like a "bully" to the right side. 

"She had one half of her brain that was catastrophically malformed, meaning it was not formed in a way where it was making normal signals...all it's doing is bullying the healthy hemisphere. That side seizes and seizes and seizes," he said. 

Since the two hemispheres are connected, Ingram said doctors decided to disable the left hemisphere, and "remove the bully from the equation so the healthy hemisphere could grow up."

Two days before she was scheduled for surgery, on her first birthday, the seizures stopped. Khloe underwent surgery on April 19. She hasn't had a seizure since.

Ingram said the left side of Khloe's brain is "still seizing" but "it's just not plugged into anything." 

"The healthy hemisphere gets to take over everything," he said. 

Now, Khloe is a "wiggle worm" who "laughs a whole lot." The idea of her daughter laughing wasn't even possible before, Tamanda said. 

'She has so much personality now'

"After surgery, she just opened up like a flower. She blossomed. She has so much personality now...as she began to grow and learn things all over again, it was amazing. The surgery really worked.

"No mom wants to watch their baby just lay there. When she began to move and babble and look around, it was just amazing. It felt really good."

Doctors have since told Tamanda "everything is working in Khloe's favor." They still don't know if she will be able to one day walk or talk but her babbling is a good sign.

Khloe is even saying several words, Tamanda said. 

The first time Khloe said 'Ma,' Tamanda said she didn't believe it. But when she said it again a few days later in front of a speech therapist, Tamanda knew it was real. "My baby can say 'Ma'!"

Late last summer, for the first time in her life, Khloe was able to go to daycare. She babbles and laughs so much during nap time that she keeps the other children awake. And, she can roll to her right side and has started trying to scoot off the lap of anyone holding her.

For the first time since her daughter's birth, Tamanda is able to work again. And, thanks to Khloe's personal nurse, she said can do simple tasks other parents may take for granted.

"I can go to Walmart and I know she's OK," she said. 

Reflecting on the past couple of years, Tamanda begins to cry. 

"When I say I had to pray, I had to have people praying for me. There were days where I didn't have the strength to go on. I just felt like I couldn't do it. But, I know it was from prayer.

"I would just cry to my mom, there were days I would cry in my room ... But when I look at her babbling and talking, she gives me the push that I need. When I saw she thrived to live, that made me go on. I didn't want to give up on her, just like I didn't want her to give up on me as a mom. 

Tamanda said she kept telling herself, "'I cannot fail this little girl, she did not ask to be here.' So, we're here, a year later."

Tamanda has hope for their future. She wanted to take college classes last fall but, due to Khloe's countless doctor visits, school isn't an option right now. She plans to one day be a nurse, inspired by those who took such great care of Khloe.

While the current goal is to get Khloe to be able to sit up, Tamanda holds out hope for more.

"I can't wait for her to run and hide in cabinets and things like that," she said. "I hope she grows out of this. I want her to walk, talk, but if not, that's OK. I'm ready for whatever it gives me. We didn't have any bad days. We have bad moments, but we don't have bad days. 

"Cherish every moment you get with them, 'cause they're precious."

Contact Sarah Fowler at 601-961-7303 or sfowler@gannett.com. Follow her on Facebook and Twitter.