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Hope for daughter with rare disease, mother stays positive for daughter in hospice care

“Every day I am grateful for one little day with my daughter. It means a lot. My life now is day by day. It is not what I will do in two months or six months. I don’t care what is going to happen. It is just day by day, minute by minute. I just want to be with her.”
Yiuvany Aguilar, Camila Aguilar
Posted at 6:45 PM, Feb 25, 2021
and last updated 2021-02-26 02:23:24-05

BAKERSFIELD, Calif. (KERO) — One Bakersfield family is currently going through the unimaginable. Their 6-year-old daughter is now in hospice care due to a rare disease called Alstrom Syndrome, which causes a wide variety of health issues.

One Bakersfield family is currently going through the unimaginable. Their 6-year-old daughter is now in hospice care due to a rare disease called Alstrom Syndrome, which causes a wide variety of health issues.

Yiuvany Aguilar is the mother of Camila, who has that rare disease, and after finding out her daughter’s health was starting to decline, it felt that there was no hope. But now the family is looking at this difficult time through a different light and as Yiuvany is spending as much time as she can with her daughter.

“My daughter, she got sick. And my journey started there,” said Yiuvany Aguilar.

In 2014, Yiuvany had twin girls, Camila and Isabella. But soon after they were born, she received the news no parent wants to hear.

“They found that they both had a genetic problem,” said Yiuvany.

This was found to be Alstrom Syndrome, a rare genetic disease that impacts hearing, sight, and speech and at just two years old, Isabella passed away. Now 4 years later, her twin sister Camilla’s health is on the decline.

“October of last year, she started deteriorating,” explained Yiuvany.

Camila is now in palliative and hospice care in her Bakersfield home, and a few months ago, her mother felt as if there was nothing she could do.

“I started feeling a little bit more anxious and depressed. You know, those kinds of feelings. I am losing my other child, kind of like I am giving up on everything.”

But something told Yiuvany to not give up hope and she believes that the power of positivity has made it easier on her daughter.

“Something inside of me told me, you know. You never know. She is better. She has been enjoying her time at home. I was able to take her outside for the first time in February.”

Make-a-Wish heard about Camila’s situation and wanted to give her a room makeover which included new bedding and curtains, which appears to have helped bring some joy.

Camilla also loves being in nature and Yiuvany makes it a habit to get her daughter outside as much as possible to let her do what she loves.

“At the beginning, I was looking at her as a source of sadness, depression, hopelessness, but now, she is my inspiration.”

Now Yiuvany is taking life day by day with her daughter and simply asks the community to send positive prayers their way.

“I know that she is a little bit better today. I don’t know what is going to happen tomorrow but I am not focused on that. I am focused on the present only.”

Yiuvany is asking the community to send positive prayers their way and is even looking for help with creating a garden so that Camila can enjoy her time outside.