Ketzel Levine is NPR Senior Correspondent for "Morning Edition" and has reported on everything from the restored prairie at the Bush ranch to the 100th anniversary of Madam Butterfly.
Wellness: Healthy Living
Batten Disease, a rare illness, has brought two communities together in a most unusual partnership.
June 20 2012
Lorena Ann Johnston was born on Groundhog Day in 1971. Her father remembers that her hair grew in as his was falling out. Her first five years were uncomplicated; sadly, they’d be the only easy years of her short life, which ended in 1993 when she was 22.
Lance Johnston’s daughter had Batten Disease, an inherited genetic defect that leads to a breakdown of the entire nervous system. Lorena’s symptoms began when she was six with vision problems; progressed to trouble concentrating in school; later, seizures; and finally, dementia. Because the disease was so rare and its symptoms easily mistaken for other problems, it took eight long and lonely years for Lorena’s illness to be diagnosed.
Though a diagnosis today may come more quickly, it remains just as tragic. Lorena’s dad, now executive director of the Batten Disease Support and Research Association, is determined that no one will have to go it alone. “I made a commitment to her. I’m not smart enough to go into laboratory and find a cure, so I promised her that I’d do the next best thing and try to help others. And that’s been my focus ever since.”
This dedication led Lance to a family of dogs.
Meet the Family
The caller was Stuart Eckmann, who had a hunch that something powerful might happen if the two communities talked. He invited Lance Johnston and a few parents of children with the disease to the 2003 Tibetan Terrier World Congress. Stuart Eckmann’s hunch paid off.
“All of a sudden, people are thinking, ‘Wow, here’s two very similar things going on and we’re learning from each other.’ It was like two families coming together,” said Johnston. The two communities have been exchanging information ever since, and have even teamed up to fund some of the same research, hoping that by pooling resources, they can accelerate a cure.
At a subsequent Tibetan Terrier conference, sponsored by the Canine Health Foundation, participants gathered to hear scientists discuss the latest inroads into Batten Disease, among them, stem-cell research. Outside the conference hall, parents of both species mingled, as did their children and their dogs.
Catey Allio is a soft-spoken teenager with Batten Disease; she is wheelchair-bound and blind; six-year-old Daniel Kerner is also in a wheelchair, his limbs and language erratic. Daniel’s father, Marcus Kerner, and Catey’s mother, Cathy Allio, are meeting here for the first time, in a difficult but ritualized exchange. With increasing emotion as he tells his son’s story, Marcus Kerner leans into Cathy Allio’s embrace.
Two of Cathy Allio’s six children have Batten Disease, including her youngest, 7-year-old Annie. She admits she was initially conflicted about collaborating with dog owners, feeling there was nothing comparable about a sick child and a sick dog. “But it wasn’t about a dog or a child and which was more important. It was about fighting a disease.”
Collaboration Brings Comfort
“I come from a background of working with rats and mice [in a] laboratory . . . where you could control everything. I thought, ‘This is impossible, there’s no way you can do this type of research depending on the pet population.’ But I’ve learned that it is possible. I was pleasantly surprised,” Dr. Katz noted.
This research is possible in part because of all the new tools now available, in particular, an innovative Tibetan Terrier DNA bank that has allowed him to compare genes in healthy and diseased animals as well as identify this genetic disorder in several other breeds. While his personal priorities remain human well-being, Martin Katz’s approach to his work has been radically—and humanely—changed.
Unfortunately, given the limitations of current research, Dr. Katz could not give Erika Gaspar a definitive diagnosis for her dog. But though she was sad, she seemed to feel perhaps less burdened, less alone. Which is why this extended family, galvanized by a rare disease, believes it’s onto something. Those affected have reached out beyond their respective boundaries to shepherd change and find a cure.
Copyright © 2006; Used by permission of National Public Radio
Dog's Life: Humane
Blue-Footed Boobies and Siberian Huskies
July 1 2011
For canines, 1835 was a banner year. The centuries-old sport of bull-baiting — pitting dogs against bulls — was outlawed in England. Breeding began that year for a dog we call the Golden Retriever. And in the fall of ’35, the dogged ship, HMS Beagle, dropped anchor in a zoological paradise, with a young naturalist on board who would later ignite the world of science.
Charles Darwin had no Beagle when he stepped foot on the Galapagos Islands, but visit today and you might see more of them than you will bluefooted boobies. It’s actually against the law to bring animals to the islands, but if you want a Golden Retriever, you can easily smuggle one in. Rest assured, you’ll see no bull-baiting, but you might find a hunting dog gored by a boar.
Welcome to the Galapagos nobody wants to know.
“People think the islands are the most pristine, untouched places on Earth,” says Tod Emko, who first visited the Galapagos in 2008. “That no one’s allowed to live there. They have no idea.”
Five of the dozen-plus islands in this Ecuadorean archipelago are inhabited by an estimated 30,000 people. Living among them is an unknowable number of dogs. Their marginal existence, in and of itself, is hardly unusual. But these are the Galapagos Islands, where the one-of-a-kind species Darwin studied in the 19th century — birds, tortoises, sea lions, iguanas — now co-exist with canines, “a predatory species,” explains Emko, “among benign, easyto- catch prey. Dogs are dangerous to the ecosystem. And in danger themselves.”
It’s tough to imagine a breed less suited to equatorial heat than the Siberian Husky, once a status symbol among the well-to-do. No longer. Cast-out Huskies are now the most common street dogs. Chows, German Shepherds, Dalmatians and all these dogs’ myriad offspring struggle without fresh water, starve among lava rocks, suffer from parvo and distemper, and eat island lizards — an offense punishable by death.
Enough bad news? Tod Emko’s thoughts exactly. After working in the Galapagos with Animal Balance, a group that specializes in mass sterilization, Emko took the initiative. First, he distributed a survey to the islands’ residents. “Should there be an animal hospital on the Galapagos?” The response was stunning and unanimous: Yes.
Then, he went into action. Emko, a computer programmer based in NYC, teamed up with former Legal Aid lawyer Andrea Gordon. She’d come to know the Galapagos through her ongoing work with the oceanic conservation society Sea Shepherd. In spring 2010, the two launched Darwin Animal Doctors (DAD), a nonprofit that supports modest veterinary clinics on Santa Cruz, San Cristóbal and Isabela Islands, places where animal services have been as scarce as albatross.
“We’re overwhelmed,” says Emko. “People are coming into the clinic voluntarily, saying, ‘We heard you speak at a local school. We heard of you via the grapevine.’ We’re very encouraged.”
By and large, international nonprofits such as DAD have shown that with easy access to vet care and humane education, people can and will take better care of their companion animals. Care and compassion for homeless animals is a much tougher sell. Euthanasia still trumps spay and neuter as a population control method on the Galapagos, where concepts such as foster and adoption remain the stuff of dreams.
Fortunately, animal activist Allison Lance dreams big. “Our work in the Galapagos seems insurmountable,” she says, “but we have the fight in us to preserve the most amazing place on this planet.”
Lance, a warrior of a woman, hasn’t sat still for 25 years. Her campaigns have taken her from poultry farms in Washington state to the icebergs of Antarctica. While a senior Sea Shepherd staff member, Lance literally freed dolphins from Japanese nets. As Tod Emko will tell you, “Very few human beings do in their lifetime what Allison has done in each year of her life.”
In 2004, after a decade working with others in the Galapagos, Lance began her own animal rescue work: crating up strays and buying them tickets to her Pacific Northwest home. Her first dog was Kiki, the outlaw of San Cristóbal Island, infamous for preying on local iguanas. Kiki scored big time. Says Lance, “She is fat and sassy and now lives with me.”
A few years and a few dozen rescues after Kiki, Lance expanded the scope of her work on the archipelago and founded the Galapagos Preservation Society (GPS). Its mission is to protect the islands’ fragile ecosystems and endemic species by humanely removing and rehoming non-native animals.
It’s a huge agenda, admits Lance, one that defies a single solution or a single organization. Not surprisingly, GPS works closely with DAD. Their shared approaches include introducing humane education into Galapagos schools, organizing spay-and-neuter campaigns, and getting animals in need adopted or off-island. GPS is also building alliances to check the smuggling of status breeds onto the Galapagos. They’re building dog fences, too. The fences offer families a way to keep their own “Kiki” safe from harm, while keeping everything else safe from Kiki.
It’s an exhausting, do-good agenda. And doesn’t Danielle Thompson know it. She’s the executive director of GPS and she’s nobody’s Pollyanna. Getting local government to support GPS programs, she says, “is like pulling teeth.”
“There’s a history of foreign groups handing out money to start programs,” says Thompson, “yet not engaging the local community. So nothing changes. The goal is to get people to want to make the changes themselves.”
In truth, neither Allison Lance of GPS nor Tod Emko of DAD believes any domestic animals, including humans, belong on the Galapagos. Given a voice, the islands’ Huskies, Shepherds, Retrievers and Beagles wouldn’t want to be there, either. It’s a place best suited to the creatures who evolved naturally in that zoological paradise. With all due respect to those astonishing residents, the Galapagos aren’t fit for a dog.
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