Andres Martin was on the couch at his home in Maryland, surrounded by his family, when he started talking about how people see Alzheimer's.
They think of the 70-year-olds and 80-year-olds, he said. They think of people who have already lived a full life. People who have already had children and maybe grandchildren.
"It's not what it is," Martin said.
"This," he said, pointing to his daughter, who moments ago had thrown kisses, "here's the Alzheimer."
Not yet 2 years, she looked at him and smiled, unaware that he was talking about her deepest fear for her.
"Weeeee!" He said, as if he were around.
Martin's daughter, Alexis, has not yet been tested to see if she carries a gene that makes it likely to have progressive brain disease. But the father of 31 years has reason to fear the worst: there is. His father has it. And your daughter has a 50% chance to develop it.
"I'm doing my personal struggle, my personal mission to find a cure for Alexis," Martin said. "Before leaving this world, Alexis will be in a good position."
"Everything", he said, "is for Alexis".
More knowledge generally means less unknown. This is not true for the Martin family. For them, the answers brought more questions.
Last year, Martin was a pilot for the Marine Corps, stationed in Hawaii. Then his sister sent him an article and suddenly his life changed. He stopped driving helicopters. He eventually moved to Maryland to be closer to the Walter Reed National Military Medical Center. And he took on a new mission: bringing awareness to Alzheimer's.
The article spoke about the "Jalisco mutation", a genetic mutation that affects people with roots in that region of Mexico and has been linked to early-onset Alzheimer's disease. When Martin read it, he finally understood why his father, at 40, started to forget things to the point that he had to leave his job as a welder and could no longer drive family paths without getting confused. He finally understood why his father had died at the age of 51.
Shortly after reading the article, Martin decided to take the gene test. In September 2017, he and his wife, Amanda, met a doctor to hear the results.
He remained optimistic. He got ready for the worst.
The test confirmed their fears and let them question their daughter, who will not be tested until the age of 18.
"It was the lowest for us," said Amanda Martin. "Knowing that it is possible that my husband and daughter can get sick is difficult – in ten years or five years, how will our life change?" "It's going to be completely sick? to be here, and us to find out what's there? "
He also raised questions for Martin's two sisters, who could also carry 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 the mutation, she said that she will have to consider whether her future will include a family.
"I'm not afraid it's a yes," he said of the test results. "I'm afraid of the decisions I'll have to make later."
The Martin family wanted to share his story because he believed that their best chance of fighting the disease – and ideally finding a cure before Alexis was an adult – came through awareness. They believe that to get the science, more people – and particularly the Latins – have to start participating in clinical trials.
Martin created a Facebook group for people discussing the early-onset Alzheimer's and Jalisco gene. At the start of this year, he also helped to organize a conference that brought US Alzheimer's experts to Mexico to discuss the disease.
It was the first time that some people realized what they and their relatives were dying, he said.
"It is a health disparity that is so sub-indicated among the Latins," said Jason Resendez, Executive Director of Latins against Alzheimer's. "We have certainly made significant efforts to tackle things like heart disease and diabetes, and Alzheimer's is not in the same conversation."
Latins in the United States are 50% more likely to develop Alzheimer's disease than non-Latin whites, yet they remain under-represented in clinical trials, he said.
"Mexican Americans show symptoms seven years earlier than other ethnic groups," Resendez said. "Why? We do not yet have great answers to these questions because of the lack of concentration on understanding the risks of Alzheimer's among different ethnic groups".
Martin participated in a clinical trial. He was also part of a clinical study at the University of Southern California, where John Ringman is a researcher and Alzheimer's expert on the Jalisco mutation.
Ringman said his team has identified about 70 different families so far that have the mutation. Among these, the youngest to experience the symptoms was 33 and the oldest was 54. More common, he said, is that the symptoms appear when people are 40 years old.
Based on his father's experience, Martin believes he is 10 years older before his family notices changes in him.
In an attempt to extend this timeline and keep his brain healthier, he began to undergo regular transcranial magnetic stimulation therapy at Walter Reed, learning French and playing through apps that help to stimulate mental activity.
He also tries not to think about what he can not control. His wife said he asked how he feels about the future and if he is afraid of death, but he tells her he does not care.
"I already have something trying to kill me," he explained. "Why do you help him? If I'm depressed, I'm helping him." If I do not sleep, I'm helping him. "
He would rather, he said, focus on what he can do.
What you can do is let people know that a red-haired girl who likes to play ballerinas and can count to three in English and Spanish could one day, without a cure or a way to slow down the progression of the disease, get lost Alzheimer.
What you can do is pick her up, hold her in her arms while she chuckles and feel grateful that, for now, she's still healthy enough to enjoy that moment.