Andres Martin was on his couch in his Maryland home, surrounded by his family when he began talking about how people think about Alzheimer's disease.
They are thinking about 70s and 80s, he says. He thinks of people who have lived in their full life. People who already had children and maybe even grandchildren.
"It's not like that," Martin said.
"This," he said, pointing to the daughter of his brother, who had been kissing a moment ago, "there's Alzheimer's right here."
She was still two years old, looked at him, and smiled without realizing that she was talking about her deepest fear.
"Weeeee!" She said she was on her way.
Martin's daughter, Alexis, has not yet been tested to find out if she is carrying a gene that is likely to have a progressive brain disease. But a 31-year-old father has reason to worry about the worst: he has it. His father had it. And his daughter has a 50 percent chance of developing it.
"I'm doing my personal fight, my personal mission to find a cure for Alexis," Martin said. "Before I leave this world, Alexis will be in a good place."
"Everything," he said, "is for Alexis."
More knowledge generally means less knowledgeable. That's not true for Martin's family. There were more questions for them.
Last year, Martin was a pilot of a naval corps based in Hawaii. Then his sister sent him an article and suddenly his life changed. He stopped the helicopters. Eventually, he moved to Maryland to approach Walter Reed's National Military Medical Center. And he has taken on a new mission: to bring consciousness to Alzheimer's disease.
The article concerned the "mutant mutation," a genetic mutation that affects people with roots in this area of Mexico and is associated with early onset of Alzheimer's disease. As Martin read, he finally understood why his father had begun to deal with things in the 1940s by having to leave his job as a welder and could no longer follow familiar routes without being confused. He finally understood why his father died at the age of 51.
Shortly after reading the article, Martin decided to test for the gene. In September 2017, he and his wife, Amanda, met a doctor to hear the results.
She remained optimistic. He fired for the worst.
The test confirmed their fears and let them think about their daughter who will not be tested until he is 18 years old.
"That was the lowest for us," said Amanda Martin. "Just know that my husband and my daughter are really sick, it's hard." From ten years or five years, how will our lives change? Will he be totally ill? It's possible, in twenty years it will not be here and we will find it has it? "
It also raised questions for the two sister Martin, who could also wear the gene. His sister, Elizabeth Martin, is a 24-year-old policeman in California. She is not married and has no children, but if she has a mutation she said she would have to consider whether her future would include a family.
"I'm not afraid it is," she said about the test results. "I was afraid of the decision I would have to make after that."
Martin's family wanted to share their story because they believe that their best chance of fighting this disease – and ideally finding a cure before Alexis is grown – comes through awareness. They believe that there is a need for more people – and especially Latin – to engage in clinical studies to get the science there.
Martin created a Facebook group for people to discuss Alzheimer's and Jalisk's gene. Earlier this year, he also helped organize a conference that brought experts on Alzheimer's in the US to discuss illness.
It was the first time some people realized that they and their relatives were dying, he said.
"It is such a lack of health inequality between Latinos," said Jason Resendez, Latinos Executive Director of Alzheimer's Disease. "We have definitely made a lot of effort to solve problems like heart disease and diabetes, and Alzheimer's disease is simply not in the same conversation."
Latinos in the United States is 50 percent more likely to develop Alzheimer's disease than Caucasian Latino, and still remain under-represented in clinical trials.
"Mexican-Americans show signs seven years earlier than other ethnic groups," Resendez said. "Why is it? These questions do not have much response yet because of the lack of emphasis on understanding the risks of Alzheimer's disease among different ethnic groups."
Martin took part in the clinical trial. He was also part of a clinical study at the University of Southern California where John Ringman is an Alzheimer's researcher and expert on the Jalisco mutation.
Ringman said his team had identified about 70 different families with a mutation. Among the youngest who had experience with the symptoms was 33 and the oldest was 54. More common, he said, is that symptoms appear when people are 40 years old.
Based on his father's experience, Martin believes he has another 10 years before his family records changes.
In an attempt to prolong this time axis and keep his brain healthier longer, he began to undergo regular transcranial therapy by magnetic stimulation at Walter Reed, learning French and playing games through applications that help stimulate mental activity.
He also tries to not think about what he can not control. His wife said she had asked him how she felt about the future and whether she was afraid of death, but told her that she did not care.
"He's trying to kill me," he explained. "Why should I help? If I'm depressed, I help.
He would rather concentrate on what he can do.
What she can do is to let people know that a red-haired girl who loves to make a ballerina can count in three in English and Spanish, there may be one day without a drug or a slowdown in progression of the disease to lose Alzheimer's disease.
What she can do is pick her up, put her in her arms as she giggles and feels grateful that she's still healthy enough for that moment to enjoy it.