BAKERSFIELD, Calif. — About eight years ago, Yiuvany Aguilar’s twin daughters, Isabella and Camila, were born.
"They were so pretty and so special. My family was so excited to have them. You know, we waited for them for so long and finally, they were with us," she said.
Yiuvany said she was thrilled to become a mother.
But one month later, Isabella was diagnosed with cardiomyopathy. They thought it was due to a viral infection and she was taken to the ICU at Madera Children’s Hospital.
Yiuvany was worried Camila would have the same condition.
“Finally, they were able to take both and then they found out [both] had a cardiac problem," she said.
The twins were transported to Stanford. For about six months, they were on medication with routine check ups.
Camila began to have eye problems too. Yiuvany said more doctors got involved and that’s when they got the real diagnosis.
“They found out that she had Alström Syndrome, which is very unknown," she said.
Alström Syndrome is a rare, hereditary, genetic disorder. It can cause hearing loss, type 2 diabetes, kidney and liver problems, among other things.
“It was very heartbreaking," said Yiuvany.
On November 20, 2016, Isabella passed away. Camila did alright for several more years, but got sick again and passed away on May 17, 2021.
“For me, the future looked [very] uncertain. Very unpredictable," said Yiuvany.
Yiuvany and her family’s lives were forever changed.
“They are gone physically but they are in spirit [with] me," she said.
Knowing there was no treatment or cure, Yiuvany said she would get caught up in worrying about the future.
“But that was not healthy. I needed to stay in the present moment," she said. “Every day we celebrated as a gift from God, [a] day with my twins, my daughters."
She hopes other parents can learn from her to do the same.
“Love your kids [and] be present with them as much as you can" said Yiuvany.
Yiuvany also wants to make people aware of the syndrome and inspire them to donate to the ongoing research for a cure. She said she’s grateful for the support the community has shown her from the beginning.
“Living is giving, right? We need to give something every day [and] I feel so blessed that I have this community supporting me. [From] the day I had the diagnosis with my daughters, they were with me and every step of the road," Yiuvany said.
Not a day goes by without missing the twins, but Yiuvany said she has connected with others through her experience and learned a lot about about faith and community.
“We overcome those challenges with faith, with love, with friends support, family support," she said. "Don’t lose hope. There is always a new beginning."
You can donate to the nonprofit Alström Syndrome International by clicking here.
Yiuvany is asking anyone who donates to include the message “In memory of Isabella and Camila."
