Davina’s Family Story

“She wasn’t a burden, she was my kid, and I’d do it all again.”

Ekiko “Yesenia” Aiken’s pregnancy with her daughter, Davina, was smooth and without complications. But when Davina had a seizure immediately after birth, a flurry of diagnostic tests followed.

As different diagnoses came back, Yesenia said she became a “fast advocate.”

“Her original prognosis was 30 days, and we took her home on a hospice plan… they were pretty much like, ‘Take her home, love on her and maximize the time you have with her,’” Yesenia recalled.

“From the moment she was born, everything that they gave me as far as diagnoses, I came back with, ‘Well, that’s not the final or definitive answer to what that means for her life.’ So, I advocated right away.”

Once home, Yesenia continued to relentlessly advocate for Davina and find a way to meet her medical needs while ensuring the best quality of life.

“It was just finding a way when no one was giving me any options – pressing them and finding a way. That became essentially the way we did things for the next 16 years. That’s how she made it to 16 years,” Yesenia said.

When Davina passed away at 16 in December 2022, Yesenia’s advocacy didn’t stop. She wanted to use what she learned to help other families.

One way Yesenia continues her advocacy is through our Family Advisory Council (FAC). Yesenia joined the council as a bereaved parent member in 2023.

“It really helped me to sort of pick that baton back up and feel connected to Davina and feel like that energy and drive and momentum could benefit someone else other than just our family,” Yesenia said.

“We were the perfect fit.”

Davina was born in Georgia and eventually diagnosed with Aicardi syndrome, a rare genetic disorder that affects the brain and eyes as well as other parts of the body. It caused seizures, vision problems, spinal defects and other developmental delays.

When Davina was young, Yesenia became a single parent. There were multiple hospitalizations and surgeries to repair Davina’s scoliosis. Yesenia also worked to find the proper medications to manage Davina’s seizures and a nutrition plan to help Davina gain weight.

Yesenia began her bachelor’s degree studies as a psychology major and completed her degree in English – creative writing. She credits those early studies as formative in her knowledge of the brain and understanding that “malformation doesn’t determine what type of malfunctions happen.”

Therefore, as she learned of Davina’s impairments, Yesenia was determined to see how Davina would actually develop before assuming what her daughter was capable of.

Yesenia said she was never afraid to ask questions and consider all options. Ultimately, she would make decisions that fit Davina’s and her lifestyle.

“I would always inquire about everything and get as much information as I could get, but then I would narrow it down to what’s important to us, what maintains Davina’s quality of life, and what keeps her happy while maintaining my sanity, and not feeling guilty for that balance,” she said.

Davina developed a passion for music, with a special love for classical and jazz. She also was a social butterfly with other kids and always ready for an adventure.

“She was a very comforting spirit and was very calming and soothing to be around,” Yesenia said. “We were the perfect fit… she was the biggest blessing, and I enjoyed being there for her. I enjoyed all the care and the challenges, too. She wasn’t a burden, she was my kid, and I’d do it all again.”

When Davina was 11, Yesenia decided to move back to her native Evanston so they could be closer to family and give Davina more educational opportunities.

After the move, Yesenia learned about DSCC from other families she met through their Aicardi syndrome connection.

Davina thrived at school in Evanston, but finding available at-home nursing was challenging. Yesenia worked closely with her DSCC Care Coordinators to try to find the right services for Davina’s level of care.

When the pandemic hit in 2020, the change in school and therapy routines affected Davina’s overall health. Yesenia said her DSCC Care Coordinator at the time worked hard to help the family try to bridge the gaps.

“A lifeline”

After Davina passed away, her Care Coordinator asked Yesenia if she would consider joining DSCC’s Family Advisory Council whenever she felt ready.

“I was really grateful that she presented it and was very respectful with how she presented it. She phrased it as, ‘I don’t want you to feel overwhelmed or burdened and don’t feel any obligation, but I really think this would be a good place for you to help continue to advocate,’” Yesenia said.

“Honestly, for me, (the FAC) was kind of like a lifeline. In that moment when you’re going through so much and there’s so much going on around and the grief has not quite settled in, it’s kind of like a line that keeps you connected.”

When Yesenia attended her first meeting, she was immediately impressed by the other parents’ passion, knowledge and diverse backgrounds.

“Everyone brings something different to the table, but the fact there are several parents who have taken on full-time jobs in respective organizations and brought what they get from those organizations to the table. It was really impressive to see parents being so involved,” she said.

A future in advocacy

As an FAC member, Yesenia said she’s excited to contribute to its newly formed transportation committee, which is looking at the challenges families face in transporting their children to medical appointments, hospitals, therapies, etc., all over Illinois.

Yesenia said it’s refreshing to meet and know other families who are fighting just as hard for their kids. She also explained that her connection to other families and the world of caregiving is still vitally important to her identity after losing Davina.

Yesenia also wants to honor and continue sharing what Davina taught her throughout her 16 years.

“It wasn’t for me to go through, get through and then leave it alone once it was done,” Yesenia explained.

“She basically gave me a foundation for a future in advocacy, and she was essentially sort of the fuel to say, ‘This is not where it stops. You’ve gained so much in this experience; move forward with what you have, and don’t leave it alone.’

So that’s what I’m trying to do now. I’m trying to make sense of the journey and all of the struggles and use those experiences to move me forward and to help others move forward.”