Andres Martin was on the couch in his Maryland home, surrounded by his family, when he started talking about how people view Alzheimer’s.
They think of 70-year-olds and 80-year-olds, he said. They think of people who have already lived full lives. People who have already had children and maybe grandchildren.
“That is not what it is,” Martin said.
“This,” he said, gesturing toward his toddler daughter, who moments earlier had been blowing kisses, “is Alzheimer’s right here.”
Not yet 2 years old, she looked at him and smiled, unaware that he was talking about his deepest fear for her.
“Weeeee!” she said, as if she were on a ride.
Martin’s daughter, Alexis, has not been tested yet to see if she carries a gene that makes it probable she will have the progressive brain disease. But the 31-year-old father has reason to fear the worst: He has it. His father had it. And his daughter has a 50 percent chance of developing it.
“I’m making it 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 spot.”
“Everything,” he said, “is for Alexis.”
More knowledge generally means fewer unknowns. That is not true for the Martin family. For them, answers have 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 flying helicopters. He eventually moved to Maryland to be closer to Walter Reed National Military Medical Center. And he took on a new mission: to bring awareness to Alzheimer’s.
The article was 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. When Martin read it, he finally understood why his father, while in his 40s, started forgetting things to the point that he had to quit his job as a welder and could no longer drive familiar routes without getting confused. He finally understood why his father had died at the age of 51.
Shortly after reading the article, Martin decided to get tested for the gene. In September 2017, he and his wife, Amanda, met with a doctor to hear the results.
She remained optimistic. He braced himself for the worst.
The test confirmed their fears and left them wondering about their daughter, who won’t be tested until she’s 18.
“That was the lowest for us,” Amanda Martin said. “Just knowing that it’s possible that my husband and my daughter could get really sick is hard. Ten years from now or five years from now, how’s our life going to change? Is he going to be completely sick? It’s possible. Twenty years from now, is it going to be he’s not here, and us finding out that she has it?”
It also has raised questions for Martin’s two sisters, who could also carry the gene. His sister, Elizabeth Martin, is a 24-year-old police officer in California. She is not married and does not have children, but if she does have the mutation, she said she will have to consider whether her future will include a family.
“I’m not scared of it being a yes,” she said of her test results. “I’m scared of the decisions I will have to make after that.”
The Martin family wanted to share their story because they believe their best chances of combating the disease - and ideally finding a cure before Alexis is an adult - will come through awareness. They believe that for science to get there, more people - and Latinos, in particular - need to start participating in clinical studies.
Martin has created a Facebook group for people to discuss early-onset Alzheimer’s and the Jalisco gene. Earlier this year, he also helped organize a conference that brought U.S.-based Alzheimer’s experts to Mexico to discuss the disease.
It was the first time some people realized what they and their relatives were dying from, he said.
“It is such an under-addressed health disparity among Latinos,” said Jason Resendez, the executive director of Latinos Against Alzheimer’s. “We’ve certainly made major efforts to address things like heart diseases and diabetes. Alzheimer’s just isn’t in that same conversation.”
Latinos in the United States are 50 percent more probable to develop Alzheimer’s than non-Latino whites, and yet they remain underrepresented in clinical trials, he said.
“Mexican-Americans present symptoms seven years earlier than other ethnic groups,” Resendez said. “Why is that? We don’t have great answers to those questions yet because of the lack of focus on understanding Alzheimer’s risks among different ethnicities.”
Martin has participated in a clinical trial. He also was 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 has identified about 70 different families so far that have the mutation. Among them, the youngest to experience symptoms was 33 and the oldest was 54. More common, he said, is for symptoms to appear when people are in their 40s.
Based on his father’s experience, Martin believes he has 10 more years before his family notice changes in him.
In an effort to extend that timeline and keep his brain healthier longer, he has started undergoing regular transcranial magnetic stimulation therapy at Walter Reed, learning French and playing games through apps that help stimulate mental activity.
He also tries not to think about what he cannot control. His wife said she has asked him how he feels about the future and whether he’s scared of death, but he tells her he doesn’t worry about that.
“I already have something trying to kill me,” he explained. “Why help it? If I’m depressed, I’m helping it. If I don’t sleep, I’m helping it.”
He would rather, he said, focus on what he can do.
What he can do is let people know that a little girl with red hair who loves to do ballerina twirls and can count to three in English and Spanish could one day, without a cure or a way to slow down the disease’s progression, be lost to Alzheimer’s.
What he can do is pick her up, clutch her in arms as she giggles and feel grateful that, for now, he is still healthy enough to enjoy that moment.