Surgery keeps animal park owners' daughter seizure free so far
HARPURSVILLE, N.Y. — The crowd clusters around a tall enclosure on a wide wooden deck, necks craned to catch a glimpse of three giraffes and the man whose simple idea made them famous.
Jordan Patch, co-owner of Animal Adventure Park with his wife, asks the crowd to take two steps back. And just one more after that.
"Show of hands: Who's here from out of town?" he calls.
Dozens of hands shoot into the air, thanks to the live-streamed pregnancy of April the giraffe and the birth of her calf, Tajiri, on April 15.
The birth has brought triple the amount of visitors, hailing from all over the world, to the 15-acre park in this tiny upstate New York town and a lot more attention on the park's owner, who now gets stopped and asked to take a photo every few steps as he navigates the winding path of the animal haven he built in 2013.
► April 23: April, offspring turn into marketing bonanza for zoo
► April 19: Wildlife groups petition to add giraffes to endangered species list
► April 18: As April the giraffe's calf grows, so will park they call home
But beyond the spotlight their giraffe family has brought, Patch's family has had a more personal, more precious success.
Ava Joelle Patch, whose first months of life were riddled with medical turmoil and uncertainty, is free for the first time from the frequent seizures that had plagued her since she was 3 months old.
Her tumultuous fight
Before Ava was born Jan. 15, 2016, doctors discovered an arachnoid cyst. The cyst sits between the surface of the brain and the cranial base on the arachnoid membrane, one of the three membranes that cover the brain and the spinal cord.
After surgery to remove the cyst, the 3-month-old developed an infection and began having seizures, which have hindered her development since.
Some days Ava had 30 seizures.
► April 16: Height, weight of April the giraffe's calf announced
► April 15: 1.2 million tune in as April the giraffe finally gives birth
It took months to gather enough clues — agenesis of the corpus callosum, a complete or partial absence of the band of white matter connecting the brain's two hemispheres; spots on her retina, the tissue at the back of the eye that senses light and sends images to the brain; infantile spasms, a rare seizure disorder not characterized by overall convulstions that occurs in children younger than a year — to diagnose Ava's condition: Aicardi syndrome. The disorder occurs almost exclusively in girls, according to the National Institutes of Health.
While many people reached out to the Patches to offer monetary support, the family has rerouted the effort to help other families with children facing similar battles. This year, their Ava's Little Heroes fundraising event raised $40,000 for families in this area near the Susquehanna River about 150 miles north of Philadelphia.
Now nearing 2 years old, Ava has been prescribed a line of different medications, was put on a ketogenic diet high in fat that doctors use to treat forms of epilepsy in children, and is monitored closely for changes.
Ava has therapy five times a week: physical therapy, occupational therapy and speech therapy.
She has hit her milestones but more slowly than what is considered normal. She didn't have much muscle tone or movement in her left side. She had had fewer seizures, but they still occurred.
Over time, those seizures would become life threatening, the new parents were told. They would have to wait and see.
On Oct. 24, the Patches took drastic action.
"We said, 'All right, we're doing this, and we're doing it now,' " Jordan Patch said.
And so, Ava's parents peered down at their daughter in a small metal crib at Children's Hospital of Philadelphia and told her they loved her. A team of medical professionals then began a hemispherotomy, a five-hour operation disconnecting the right side of Ava's brain. (The left side had never produced a seizure.)
During those hours, Jordan and Colleen Patch talked about everything but what was happening inside the operating room. They sat in the waiting room with their parents, 200 miles away from a tiny camera, the size of a pack of gum, that continued to usher thousands of virtual viewers into the Patches now-famous giraffe barn.
Year of the giraffe
Before Ava's surgery, even before Ava's birth, when Jordan Patch first opened Animal Adventure Park in 2013, he had a dream: By year five, he wanted giraffes on site.
Ahead of schedule, the park has not only one giraffe but a family of them.
"Dreams become reality up here," he said during a recent interview at the park.
► March 14: The science behind milking a hippo, saving baby Fiona
► March 31: Is April the giraffe still pregnant?
In December 2016, scientists added giraffes to the list of threatened and endangered animals, according to the International Union for the Conservation of Nature, listing them as "vulnerable to extinction."
"The whole purpose of having giraffes is preservation, genetic diversity," Patch said.
He saw streaming April's pregnancy as an opportunity to educate.
"With one video endeavor, we literally changed the way the world saw giraffes and conservation," he said. "It provided sustainability for the park, but it also created an awareness about giraffes that conservationists and scientists and zoologists have tried to do for decades."
Part of the proceeds from a naming contest for Tajiri was earmarked for giraffe conservation; the park sent its own gift of $30,000 to the cause; and with every trip to Animal Adventure Park, visitors are treated to the park's "giraffe talk" — a lesson on the anatomy, habits and global vulnerability of giraffes.
The spotlight, business relationships and attention have also allowed the Patches to make big changes at the park.
'It is an adventure'
Since the start of the 2017 season, admission tripled, staff doubled and the world of possibility expanded with the Patches' purchase of 115 acres of land sitting directly across from the park.
This year brought the addition of nine new species, which equates to "at least 20 to 30 new animals," Jordan Patch said. Some are rescues, some are swapped with other animal parks to diversify bloodlines.
The park's East African crowned cranes, brought from the Cape May County Park & Zoo, are a result of its first Species Survival Plans Program partnership with the Associate of Zoos & Aquariums.
► March 22: Yes, April the giraffe is still pregnant. And she may be a month past due
► March 3: Colorado zoos work together to save baby giraffe
They have a new South American primate building, larger parking lot and repaved and widened park paths. Coinciding with the first Jungle Bells, a recurring winter weekend event beginning Dec. 2, the animal park will have a new welcome center and gift shop.
"The successes of this year will allow us to continue this for years to come," Jordan Patch said.
In October, the New York State Tourism Industry Association recognized Patch's efforts, with a tourism excellence award.
Thousands of viewers still check in with their favorite giraffe family every day on the park's live stream. April's fans have been wildly speculating about the possibility of another pregnancy.
The truth is park workers don't know yet, and Jordan Patch said he couldn't safely confirm a pregnancy until the six- to eight-month mark.
Great expectations
When Ava came out of surgery, she was noticeably groggy. That was not a surprise.
Then her left arm moved. That was a surprise.
Colleen and Jordan Patch watched their daughter, waiting for her eyes to deviate to the right, for the straightened arm or curled toes, all signs of Ava's seizures.
► March 2: How long do I have to watch that giraffe before it has its baby?!
► Feb. 24: Live giraffe cam pulled for showing ‘nudity and sexual content’
They never saw a problem.
Ava even gave her surgeon a high five that night.
The next few days were tough. Sometimes Ava cried and Colleen Patch wasn't allowed to pick her up — it was imperative a drain be kept level with Ava's brain.
Other days Ava wouldn't eat. But each day brought a growing sense of victory: another day seizure free.
The family, which had packed for a monthlong stay, was cleared to return home the week of Ava's surgery, no inpatient therapy, no complications.
Ava has been seizure free since.
One day in mid-November, three weeks post surgery, is by all accounts a mundane afternoon inside Animal Adventure's new welcome center.
Ava sits on the slightly dusty floor surrounded with empty brown boxes and not far from a pile of plush pigs. She grabs one.
Two cardboard pizza boxes sit on the countertop for members of Jordan Patch's crew, who make sporadic appearances, grabbing a quick bite before heading back out to attend to all the details to prepare the park for its winter debut.
"Here," said Jordan Patch, getting a good grip underneath his daughter's arms and pulling her up to stand. "Walk to Mama."
Ava takes a determined step with her right foot, then kicks her left forward. Her father steadies her.
► Dec. 9: 'Vulnerable' to extinction: What giraffes are up against
► August 2016: Baby giraffe welcomed at Cincinnati zoo
"Good girl," Colleen Patch said, reaching out. "See before, she would never do that on her own. We'd have to push (her leg)."
Ava squeals and bounces, smacking her lips until they make a popping sound, mimicking her dad.
She's loud and excitable, every bit the almost-2-year-old. Only the long scar beneath her hair that curves around her head, and the fainter one beneath it, are clues to the ordeal this little girl has endured.
When Colleen Patch spoons some of Ava's snack — a precisely measured mixture of canola oil, yogurt and heavy cream adhering to her ketogenic diet — into her mouth, she smiles up at Jordan and hums in approval.
In a few months, Ava will be weaned from the diet and eat normally. Maybe by then she'll be walking, too.
She's already started getting into trouble, scooting around and grabbing everything in sight, her parents say. They never had to baby proof before.
"We're learning the new Ava," Jordan Patch said. "The fact that we can move on as a family now and experience some normalcy to our life, that's a welcome change."
With the new Ava comes great expectations: of a growing family, they're expecting another girl in 2018; a growing park; and a dream Jordan Patch has had since Ava was born. He wants to see her running through the animal park, the park he created, handing carrots to giraffes and bottle-feeding baby pigs.
But they said they'll wait and see and take whatever comes.
Colleen Patch's due date for baby No. 2, Ella Noelle Patch, is April 15, the same date April the giraffe had her calf.
Jordan Patch calls it serendipity.
Follow Katie Sullivan on Twitter: @ByKatieSullivan