Finding hope and resilience while spreading awareness

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BAKERSFIELD, Calif. — About eight years ago, Yuvani Aguilar gave birth to twin daughters, Isabella and Camila.

“They were so beautiful and so special. My family was very happy to have them. You know, we’ve been waiting for them for so long, and finally they were with us,” she said.

Yuvani said that she is very happy to become a mother.

But a month later, Isabella was diagnosed with cardiomyopathy. They thought it was due to a viral infection, and she was taken to Madera Children’s Hospital’s intensive care unit.

Yuvani was worried that Camila would be in the same condition.

“Finally they were able to take both and then they found out [both] I had heart problems,” she said.

The twins were transferred to Stanford. For about six months, they took the medicine with routine check-ups.

Kamila also started having problems with her eyes. Yuvani said more doctors were brought in and then they made the correct diagnosis.

“They discovered she had Alström syndrome, which is very unknown,” she said.

Alström’s syndrome it is a rare, inherited, genetic disorder. It can cause hearing loss, type 2 diabetes, kidney and liver problems, among other things.

“It was very heartwarming,” Yuvani said.

On November 20, 2016, Isabella passed away. Camille was fine for a few more years, but fell ill again and died on May 17, 2021.

“For me, the future looked [very] uncertain. Very unpredictable,” Yuvany said.

Yuvani and her family’s lives changed forever.

“They left physically, but they stayed in spirit [with] me, she said.

Knowing that there is no cure or cure, Yuvani said she will be drawn into worrying about the future.

“But it was unhealthy. I needed to stay in the present moment,” she said. “We celebrated each day 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 children [and] be present with them as much as you can,” Yuvani said.

Yiuvany also wants to make people aware of the syndrome and inspire them to donate to ongoing research for a cure. She said she is grateful for the support the community has given her since the beginning.

“To live is to give, right? Every day something has to give [and] I feel so blessed to have this community behind me. [From] The day I was diagnosed with my daughters, they were with me every step of the way,” Yuvani said.

Not a day goes by without missing the twins, but Yuvani said she has connected with others through her experience and learned a lot about faith and community.

“We overcome these trials with faith, love, support of friends, family,” she said. – Do not lose hope. There is always a new beginning.”

You can make a donation to the non-profit organization Alström Syndrome International by clicking here.

Yiuvany asks that anyone who donates include a message “In memory of Isabella and Camilla.”



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