People always say that God does not give us more than we can handle, well, God chose me to be the mother of the most wonderful little girl. Her name is Meilani, and she turned five at the beginning of August. I was pregnant, and gave birth during Covid. During my pregnancy, I was informed that she would be born with Spina Bifida. The doctor suggested that I have an abortion. It was already an unsure time in the history of the world, and not knowing the severity of her condition, made my pregnancy all that more stressful. We chose life and she was born August 4, 2020.

Meilani was born at UCI in Irvine by cesarean, and after she was born, she was immediately transported to Children’s Hospital of Orange County(CHOC). I had to stay in the hospital until the next day and was unable to be with her, or hold her the first 24 hours. Once I was released, my husband and I had to take turns visiting due to the Covid rules. The form of Spina Bifida she was born with is called Myelomeningocele which is the most serious type. With this condition, a sack of fluid comes through an opening in the babies back. Part of the spinal cord and nerves are in the sack and are damaged. This type can cause moderate to severe disability, such as problems affecting how the person uses the restroom, loss of feeling in the persons, legs, and or feet, and not being able to move their legs.

Spina Bifida can range from mild to severe and some people may have little to no disability, while others may be limited in the way they move or function. Some may even be paralyzed or unable to walk or move parts of their body. Even so, with the right care, most people affected by spina bifida lead full, productive lives.

Meilani was also diagnosed with Hydrocephalus. Hydrocephalus is a condition where there is an excessive buildup of cerebrospinal fluid (CSF) in the brain's ventricles (cavities). CSF is a clear, colorless fluid that cushions and nourishes the brain. She had surgery to have a VP Shunt placed on day four. Since then she has had a total of two more VP shunt surgeries one being an emergency on June 6, 2022 where she stopped breathing, but with the grace of God, they were able to revive her.

She went through her first surgery, which was her back closure on the day she was born and her VP shunt placed on day four. She was released from the Nicu at Children’s Hospital Orange County on day 17. Once we got her settled we slowly integrated her into our “new normal” with family and friends.

Due to her disability, she got referred to start occupational therapy and physical therapy right away but because of her being so young they decided to wait and start therapy about six months old. She is still learning to walk and how to do self care. She wears plastic braces to help support her legs while trying to stand and walk, they are called AFO’s. About every six months as she continues to grow she gets new ones. She did have a more recent surgery in September 2025 called tendon lengthening to help correct her plantar flexion and hopefully this will help her get stronger and have more confidence to walk. She has also had multiple rounds of Botox injections in her calves to help loosen the tightness in her legs/feet. At home she currently crawls to get around, but she also has a walker, a wheelchair and arm crutches.

Due to her disability, I cannot leave her in a traditional TK or preschool program. So now that she has turned five, we have started her on a homeschool kinder program, but she lacks the confidence that other kids have so it has been hard.

As she grows older, so do her needs. The most recent surgery was the tendon lengthening and she was in casts for six weeks. Because of this she got weaker and has taken a giant step back with walking. Our insurance only covers a couple sessions a week for physical therapy and it was suggested that she get more therapy sessions to help build up her strength and resistance with walking and standing. Water therapy is one she really loves, hoping to get her back in to it. Right now, I have her in public homeschool program, based out of Temecula and I’m hoping that they will be able to have her join their part-time day program with some of the other kids a couple days a week at a campus near our home, but we are still waiting to see if they can accommodate her with a one on one aid. Taking care of her is definitely a full-time job but one that I am blessed to have.

Meilani is just like any other kid her age she loves her puppy, making new friends, playing with her cousins, loves going to church, loves her older brother and sister and loves Jesus too. Her favorite song is Holy Forever by Chris Tomlin.

I have set up this GoFundMe in the hope that we can raise additional money for extra therapy sessions as well as paying a teacher that has been working with her eight hours a week in my home.

Thank you for the support.

Sara Silva