ED KASHI

Sonia Iris Cardona, who taught bilingual language classes for 29 years for Kindergarten through 8th graders, first started showing signs of Early Onset Alzheimer’s at age 48. After being passed around for a while by two of her children, Sonia was “dropped…off…with a small suitcase” on the steps of her single daughter Daisy Duarte’s home in Springfield, MO. That was four years ago.

After closing her sports bar in November 2012 to care for her mother fulltime, Daisy, who is 39 and has no children, waitresses at her sister’s restaurant to help pay bills. Sonia, now 58, accompanies her daughter to work and sits for hours at a corner table with coloring books and crayons. Since Daisy has no idea how much time her mother has, she’s trying to fill their lives with as many fun things as possible – special trips, going to her mother’s beloved Cubs’ games and out to eat, playing pool; to do whatever she can, while she still can. Although Daisy says that caring for her mother is challenging, she wouldn’t have it any other way. “I’ve looked into homes but I don’t have the heart to do it…I just can’t. She’s my world. Why would I turn my back on her now when she needs me the most?”

While there is no history of Early Onset Alzheimer’s on Daisy’s paternal side, her mother’s family has an extensive family history of the disease, which represents 4 percent of all Alzheimer’s cases. With a 50/50 chance of getting it, Daisy – unlike her brother and sister – wants to know her situation and so goes in for genetic testing. If she tests positive, she can enroll in a clinical trial for a new drug that researchers hope will hold off symptoms of early Alzheimer’s for as long as a decade. “I guess I just want to be prepared,” she says of her decision to find out. “My Mom didn’t know anything, and she was bouncing from house to house. If my friends say, ‘Daisy, you’re getting bad,’ I’ll just put myself in a home.”

After unfortunately testing positive for the gene linked to early onset of Alzheimer’s Disease, Daisy is part of the Dominantly Inherited Alzheimer Network (DIAN), an international research project aimed at hopefully one day finding a way to treat or even prevent the disease.  “I have nieces and nephews,” she says. “I would like by their time to have a cure or at least be able to stop it from being so aggressive.”

Sonia Cardona, 58, poses for a portrait at home in Springfield, Mo. on June 6, 2014. Cardona is currently suffering from early onset of Alzheimer's Disease, and is cared for by her daughter Daisy Duarte, 38.

Sonia Cardona, 58, poses for a portrait at home in Springfield, Mo. on June 6, 2014. Cardona is currently suffering from early onset of Alzheimer’s Disease, and is cared for by her daughter Daisy Duarte, 38.

With the help of her niece, Celena Prado, 22, Daisy dresses her mother, Sonia. This is part of their morning routine where Daisy wakes up her mom, dresses her, feeds her, and puts her makeup on.

With the help of her niece, Celena Prado, 22, Daisy dresses her mother, Sonia. This is part of their morning routine where Daisy wakes up her mom, dresses her, feeds her, and puts her makeup on.

Alzheimer's - Daisy Duarte

Daisy helps her mother get around at home in Springfield, Mo.

Daisy has a stubborn face off with her mother during breakfast.

Daisy has a stubborn face off with her mother during breakfast.

Sonia gets situated in the car after hanging out with Daisy at their favorite bar, The Buffalo Tap in Springfield, Mo. on June 5, 2014.

Sonia gets situated in the car after hanging out with Daisy at their favorite bar, The Buffalo Tap in Springfield, Mo. on June 5, 2014.

Daisy brings Sonia shopping in Springfield, Mo. on Aug. 8, 2014.

Daisy brings Sonia shopping in Springfield, Mo. on Aug. 8, 2014.

Celena waits patiently as her aunt Daisy gets Sonia ready to leave the house.

Celena waits patiently as her aunt Daisy gets Sonia ready to leave the house.

Daisy talks with her father, Juan Duarte, 58, at home in Springfield, Mo.

Daisy talks with her father, Juan Duarte, 58, at home in Springfield, Mo.

Daisy sits anxiously in the waiting room at Cox Health Center in Springfield, Mo. on June 5, 2014. Daisy is there for a genetic test that will determine if she will develop early onset of Alzheimer's Disease.

Daisy sits anxiously in the waiting room at Cox Health Center in Springfield, Mo. on June 5, 2014. Daisy is there for a genetic test that will determine if she will develop early onset of Alzheimer’s Disease.

Daisy listens intently as her genetic counselor, Mary Owen discusses the testing procedures at Cox Health Center in Springfield, Mo. on June 5, 2014.

Daisy listens intently as her genetic counselor, Mary Owen discusses the testing procedures at Cox Health Center in Springfield, Mo. on June 5, 2014.

Daisy braces herself as the nurse prepare to draw blood for the genetic test on June 5, 2014.

Daisy braces herself as the nurse prepare to draw blood for the genetic test on June 5, 2014.

Sonia Cardona waits for her Daisy to finish work at the Amigos Restaurant in Springfield, Mo. on June 6, 2014.

Sonia Cardona waits for her Daisy to finish work at the Amigos Restaurant in Springfield, Mo. on June 6, 2014.

Sonia sits in her usual spot while Daisy works at the Amigos Restaurant. Sonia accompanies Daisy to work on a regular basis so that she can care for her mom while working.

Sonia sits in her usual spot while Daisy works at the Amigos Restaurant. Sonia accompanies Daisy to work on a regular basis so that she can care for her mom while working.

Sonia colors to pass the time during Daisy's shift at the Amigos Restaurant on June 6, 2014.

Sonia colors to pass the time during Daisy’s shift at the Amigos Restaurant on June 6, 2014.

Celena Prado, 22, fixes Sonia's hair on the morning of Aug. 7, 2014.

Celena Prado, 22, fixes Sonia’s hair on the morning of Aug. 7, 2014.

Sonia sits patiently while Daisy does her makeup.

Sonia sits patiently while Daisy does her makeup.

Daisy buckles Sonia into her seat as they head over to the Cox Health Center in Springfield, Mo. to get the results of Daisy's genetic test.

Daisy buckles Sonia into her seat as they head over to the Cox Health Center in Springfield, Mo. to get the results of Daisy’s genetic test.

Genetic counselor, Mary Owen, delivers the news that Daisy has tested positive for the gene linked to early onset of Alzheimer's Disease.

Genetic counselor, Mary Owen, delivers the news that Daisy has tested positive for the gene linked to early onset of Alzheimer’s Disease.

Sonia comforts Daisy after receiving the news that she tested positive for the gene linked to early onset of Alzheimer's Disease.

Sonia comforts Daisy after receiving the news that she tested positive for the gene linked to early onset of Alzheimer’s Disease.

Daisy spends a quite moment alone at the Buffalo Tap bar on Aug. 7, 2014, after receiving the news from her genetic test.

Daisy spends a quite moment alone at the Buffalo Tap bar on Aug. 7, 2014, after receiving the news from her genetic test.

Daisy processes the news that she tested positive for the gene linked to early onset of Alzheimer's Disease.

Daisy processes the news that she tested positive for the gene linked to early onset of Alzheimer’s Disease.

Friends surround Daisy in a show of support at Buffalo Tap bar in Springfield, Mo. on Aug. 7, 2014. Earlier in the day she received the news that she tested positive for the gene linked to early onset of Alzheimer's Disease.

Friends surround Daisy in a show of support at Buffalo Tap bar in Springfield, Mo. on Aug. 7, 2014. Earlier in the day she received the news that she tested positive for the gene linked to early onset of Alzheimer’s Disease.

Daisy is comforted by her father who is visiting from Chicago to show support when Daisy got her test results.

Daisy is comforted by her father who is visiting from Chicago to show support when Daisy got her test results.

Daisy and Sonia bond over listening to music while waiting to be seen at Cox Health Center.

Daisy and Sonia bond over listening to music while waiting to be seen at Cox Health Center.

This story was originally shot for and published in People Magazine.

 

Alzheimer's - Daisy Duarte

Alzheimer's - Daisy Duarte

Alzheimer's - Daisy Duarte

 

ALZ_People_0315_04