The Conversation of a Lifetime

They sent in their application, and then they waited. The response took months, but finally the letter came that said that Kamiyah was one of the few, one of the chosen. And so, in January , she and her mother traveled to Bethesda, Md. Lisa Sanders that harnesses the power of you, our readers, to help find diagnoses for people suffering from mysterious medical conditions. Your ideas could potentially help save a life. Readers with the most promising suggestions may be included in an eight-part Netflix series that will air in When mother and child arrived at the N.

She would be evaluated by a team including a neurologist, a dermatologist, an ophthalmologist, an immunologist and a specialist in rehabilitation medicine. She would have studies done on just about every part of her body — her skin, her heart, her blood, her brain. At the end of the five days, the child and her mother met with the team so that the available results could be explained.

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They were also testing the child again for narcolepsy. And finally, it was possible that genetic testing might reveal the cause of these strange spells. They told her that it could be months before they had an answer — if they had an answer. I had now gone to the end of the Earth. I want them to save my kid, too. And so mother and child returned to South Dakota, hopeful, but trying to remain realistic. She had practically given up when she finally heard from the U.

The email said they had an answer for Kamiyah, now 6 years old. The whole team wanted to be there to discuss the results. When would she be available the following week? The young mother almost exploded. When she recovered herself, she emailed back, How about now? Finally, the call came. It was good to hear the voices of the doctors she and Kamiyah had gotten to know during their trip to Bethesda. Cynthia Tifft, the pediatric geneticist who led the team, broke the news.

Kamiyah had a genetic defect that was causing these strange spells.

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It was not something she inherited from either of her parents but was what is called a de novo, or new, mutation. This particular mutation caused a slowdown of one of the mechanisms controlling activity in the brain and spinal cord, and that, in turn, caused her episodes of slowing down, or what the U.

There are a number of types of paroxysmal dyskinesia, triggered by a variety of problems. And while Kamiyah was the first to receive this diagnosis at the U. Most of these young people had, in additional to the paroxysmal dyskinesia, some combination of seizure disorder, intellectual disability or developmental delay. So Kamiyah was something of an outlier, even here.

Treating these episodes — probably with some type of anti-seizure medication — so that they became less frequent, could allow Kamiyah to catch up to her normal developmental age. Which seizure medication? The mother had heard that Gillette Hospital in Minneapolis had expertise in dealing with children with complex medical problems. Would they refer Kamiyah there? They would.

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And then the call was over. And mother and child were left to try to understand what this new information might mean for Kamiyah. Because I am only one person, and as far as I reach and as hard as I try, it takes a village to raise a kid. There have been 21 patients with this exact genetic abnormality published in the scientific literature. But there are probably many more than that here in the real world. Let us know. By clicking the submit button, you agree that you have read, understand and accept the Reader Submission Terms in relation to all of the content and other information you send to us 'Your Content'.

If you do not accept these terms, do not submit any content. Of note:. I have read, understood and accept the Reader Submission Terms. Please upgrade your browser. Lisa Sanders get to the bottom of unsolved medical mysteries. Download the notes from the first PCP visit. Download the notes from the second PCP visit.

Download the letter from the second neurologist and the M. Download the Mayo Clinic admission note. Download the sleep doctor note. Download the N. If it did, you have time to re-register to vote. Make changes online. If your state has online voter registration , use that to make changes. If your state keeps track of political party preference, you will be able to change that too.

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