It's a lesson Breteni Morgan-Berg has been learning again and again after a whirlwind year in the spotlight. Her 7-year-old daughter, Kamiyah, has an exceedingly rare gene mutation that causes her to collapse multiple times a day. Kamiyah's illness, a mutation of a gene known as KCNMA1, got diagnosed last year after extensive medical sleuthing.
Kamiyah's condition made her a star in an episode of "Diagnosis," the Netflix medical detective documentary series based on the New York Times column of the same name. But while her time in the limelight didn't cure her gene mutation that remains a work in progress. Instead, it grew her family: researchers dedicated to find her a treatment, and other families dealing with the same gene mutation who thought they too were alone.
The media exposure also gave Morgan-Berg and Kamiyah a louder voice. They're known now, Kamiyah's condition a known issue. That helps too, when seeking assistance, when Morgan-Berg is making another call for help, or one more emailed request.
If theres anything Netflix and the New York Times did for us granted I pushed myself to that point and thats how we got there but it makes it much harder to ignore," Morgan-Berg said.
Kamiyah, and her appearance on the Netflix show, has catalyzed a growing network of support in the medical community. Dr. Lisa Sanders, the model for the brilliant, medical mystery solving doctor-detective main character in the show "House, M.D.," featured Kamiyah in her Diagnosis column in the New York Times prior to the collaboration with Netflix. She's just a text message away.
Dr. Sotirios Keros was a early and crucial part of Kamiyah's medical family. He got to know her in 2018 after a colleague referred the child with the then-undiagnosed condition to him.
For Kamiyah, Keros couldn't have been at a better place in a better time. A New York resident, Keros regularly commuted to Sioux Falls to work as assistant professor in pediatric neurology at Sanford Childrens Hospital and the University of South Dakota, where there was a shortage of professionals with his expertise. His specialized background in neurology and ion channel physiology meant when he saw Kamiyah's condition, what she was suffering from was clear, he said.
Keros got Kamiyah's gene mutation on a special rare disease database known as CoRDS, hosted by Sanford Health. He also co-founded a foundation the KCNMA1 Channelopathy International Advocacy Organization meant to help support the research into the KCNMA1 mutation and helping connect those with the condition with researchers and each other.
Kamiyah appearance on Netflix didn't trigger an avalanche of donations into the foundation ("Nope, nope, nope, nope"), said Keros. That funding might come in time, as a result of family fundraising and growing awareness of the condition. But the foundation is serving a more immediate purpose, acting as a crucial link between those struggling with the condition giving them a place to turn.
"The reason we started the foundation was this exact reason: to give people education and just a place to turn," he said. "Some diseases, like this one, there really isnt any treatment, but just being involved with other people is its own kind of help."
Another key member of Kamiyah's support team is Dr. Andrea Meredith, a researcher at the University of Maryland School of Medicine, who first heard about Kamiyah in Sanders' column. She was stunned to later learn the gene that causes Kamiyah's condition was the exact same one she was currently researching. Previously, she had only heard of one such patient an anonymous Chinese family documented in a 2005 paper.
"When Kamiyahs mom gave us genetics report I almost fell over because one of the mutations we had picked out of the publicly available database, with no other information other than the sequence change, ended up being the mutation that she had," Meredith said. Her work involves growing mice genetically modified with Kamiyah's condition, a key component of further research.
Meredith, too, has grown close to Morgan-Berg and her family, and helped co-found the KCNMA1 foundation with Keros. Kamiyah's photos are all over Meredith's lab, Morgan-Berg said. Meredith has a daughter who is slightly older than Kamiyah, and the two families met up in New York when Kamiyah and Morgan-Berg were making media appearances in connection to the Netflix show.
One of the most powerful things about meeting Kamiyah in person was the ability to see that sweetness and its amazing how she has that childlike innocence and sweetness, yet shes afflicted by these very powerful symptoms," Meredith said.
Meredith is now working to secure funding from the National Institutes of Health to expand her lab, due to the sheer volume of people contacting her seeking help.
"She has no idea what she means to us," Morgan-Berg said.
Also helping Kamiyah, quietly, is Massachusetts-based Q-State Biosciences. Q-State had no comment about its work with Kamiyah: "Q-State is still in the early stages of research on this project, and cannot provide details right now," said a spokesperson.
But Morgan-Berg said Q-State's work involves matching Kamiyah's genetic profile against available drugs to see if there's anything that could help possibly the most immediately promising work, if they find something.
With the good came the bad. Kamiyah's attention from the New York Times column and Netflix show brought out the worst in some people, Morgan-Berg said. Online trolls attacked Kamiyah's family, specifically her mother, accusing her of being a terrible wife, a fame-seeking welfare mom and worse.
"Terrible, horrible things you cant even make up yourself. Trolls just come out of the woodwork," she said.
Morgan-Berg locked down her Facebook account to shield herself from the worst commenters, but that didn't keep them all away.
She worried the Netflix show might make it seem that Kamiyah's condition was cured and everything was fine now. But she knows that's not the case, and she wishes others did, too.
The research grinds on, a silver-bullet solution hasn't shown up, and the big media exposure didn't solve her family's biggest immediate problem: negotiating the tangled web of bureaucracies to get Kamiyah help she needs now, trained care providers who can help take care of a growing girl, protecting her from her own body.
Its hard enough to be told that Kamiyah is going to die before they can help us, that the information that we give on Kamiyah could help someone else," said Morgan-Berg. "But the fact is that we cant even get help with the quality of life we have left.
Morgan-Berg is required to interview and hire the care providers first, then seek funding. But because Kamiyah's condition is so rare, it can be difficult to obtain what she needs through insurance. Morgan-Berg said she's applied for coverage from the care providers multiple times, and gotten turned down each time, putting her in a quandary: Let the caregivers go, or pay for them out of pocket?
It's an ongoing battle that makes her dream of moving to Denmark to be close to friends she met online, whose son Atle has the same condition as Kamiyah. She presses on, powered by her family, friends and the growing network of others with the same condition and medical professional dedicated to finding answers.
"I dont want to look back and think, 'I could have done more. I want to know Ive done everything humanly possible,'" Morgan-Berg said.
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After Netflix show on rare illness, a new family bonds - West Central Tribune
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