THE COLONY, Texas _ Penny Howard rocked the little girl, stroking her hair, calling her baby and kissing her as if she were her own.
It's been nearly a year since she held her youngest daughter, Harper _ who died in January _ the same way.
"Sorry, I like to kiss," she said, bending over to plant one on 8-year-old Anny Fischer's cheek at her home in The Colony. Unable to speak, Anny blinked her green eyes back.
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"Harper hated kisses," Penny said.
For years, Penny and Dustin Howard have waited to meet Anny; her parents, Norberto and Katiele Fischer; and older sister, Julia Fischer, who all live in Brazil.
Thursday night, the Howards' home was filled with Christmas Eve-like anticipation.
The family's oldest, 8-year-old Lily Howard, cracked open the front door, peeking out to the dark suburban street. She spotted a car parked outside, and the Fischers pushing Anny's wheelchair toward the front door.
"They're here,"Lily said, a grin spreading across her face.
A COMMON BOND
Separated by languages, oceans and countries, the two families share a common bond: Both have daughters who were diagnosed with CDKL5, a rare genetic disorder that affects roughly 600 people in the world. Years earlier, a Facebook post brought the families together, and the internet kept them close.
"Don't cry, don't cry," Penny said to Katiele as they sat on the Howards' couch, talking about their families. "Do you need a tissue?"
"I need a bedsheet. A tissue is not enough," said Katiele through an interpreter, wiping her eyes with Anny's blanket.
At its worst, the disorder led to more than 40 seizures per day for Harper and Anny, and impaired their brain development.
Sometimes, for Harper, the seizures came as screams. Other times, her arm muscles would jerk outward like spasms.
Both families found relief with hemp oil _ a controversial treatment that comes from the cannabis plant _ along with their doctor-prescribed medications. The parents say it stopped their daughters' seizures months after treatment.
But it wasn't a cure.
Harper died in her parents' arms Jan. 8 at Medical City Dallas after being admitted with a respiratory infection. She was 5 years old. After her death, the family donated her brain and a deep tissue sample to science. Harper's brain was the first with CDKL5 banked for medical research.
"It's emotional. We've been waiting for this for a long time. We're just sad Harper isn't here to see it," Dustin said, fighting back tears, of meeting the Fischers.
"Hey, men don't cry," Norberto said, lifting a plastic cup of wine for a toast.
"Men don't cry," Dustin said, laughing.
SEEKING A CURE
The Fischers began giving Anny hemp oil in 2013 after reading in a Facebook post about the Howards' success with Harper.
At that time, the Brazilian government viewed anything made from cannabis, including non-psychoactive hemp, as illegal. Hemp oil is legal in the U.S. but not covered by health insurance.
Desperate, the Fischers imported it illegally into their country. Anny's seizures had worsened, making her unable to walk and severely diminishing her appetite. Within the first week, her seizures were cut in half. More than two months later, she went her first week without any.
Eventually, one of the family's shipments was intercepted by the government. Their supply ran out, and Anny's seizures returned.
"My wife and I believe that if you want good things to happen, you have to fight," Norberto said.
The family hired a lawyer, and after hearing their testimony, a Brazilian federal judge deemed it "inhumane" to keep the hemp oil from Anny, according to a news release.
Last year, the Brazilian government removed the cannabidiol from its prohibited substance list and its import tax. The government also is subsidizing the cost of the treatment for those who need financial assistance.
"This family, they've changed our story," Katiele said Thursday night while Penny held her dozing daughter on the couch.
"They've changed the story of our country."
