Daughter cannot walk or talk and has trouble swallowing. It took 17 years to find out why

We would like to extend a heartfelt thank you to Marinetta Maria, affectionately known as Gigi, for her unwavering dedication and support in championing causes that make a difference in the lives of so many. Gigi’s tireless advocacy and compassionate spirit continue to inspire and uplift our community.

Author: Syra Ortiz Blanes

Images: Sophia Bolivar sophiabolivar@outlook.com

When Standarlyn Muñoz Delgado was born in 2004, she appeared to be a healthy newborn. However, as the weeks passed, her mother, Damaris Delgado, couldn’t shake the feeling that something was wrong. “I was very happy, but I noticed that her eyes were very bright. I was worried because she wasn’t looking at me, and I thought she was blind,” said Delgado, 41.

When Muñoz Delgado was three months old, her parents took her to the Venezuelan city of Maracaibo for a medical consultation with a gastroenterologist, who referred her to a neurologist. That would be the first of a flurry of visits to medical providers over their daughter’s first years of life. Her parents grew more and more worried about their firstborn’s well-being every passing month. She did not crawl or babble like other babies Specialists poked and prodded her to find answers. “My daughter was like a guinea pig. But no one could figure out what was wrong,” said Delgado. “She would cry and cry. There were constant tears and nothing would calm her down.” Doctors in Venezuela investigated the case for years. They discovered Muñoz Delgado had experienced hypoxia at birth and gave her a diagnosis of Rett syndrome. But it wasn’t until the family came to the United States that doctors were able to reach a correct diagnosis in 2021: A faulty gene was the source of Muñoz Delgado’s neurodevelopmental disorder. “You know what it’s like 17 years to wait for an answer about what your daughter has?” said Delgado.

Today, Muñoz Delgado uses a wheelchair. She cannot walk or talk and has difficulty swallowing. She also lives with encephalopathy — a disturbance of brain function — and scoliosis — curvature of the spine. Through Medicaid, Muñoz Delgado received critical medical care and supplies like diapers and milk. But she recently aged out of her benefits, leaving her family responsible for the expense of Muñoz Delgado’s medical care. Delgado can no longer work because she serves as her full-time caregiver. It’s on her husband to support their four children and two rescue dogs. Delgado said she is afraid that her daughter will lose the effects of her multiple surgeries because the family can no longer afford physical therapy. Delgado massages her daughter’s back and legs to keep her muscles strong.

“I love this country. And I am so grateful for it. But I want my daughter to have the services she needs again,” said Delgado. Marinetta Maria is a success coach at the Advocacy Network on Disabilities, which nominated Muñoz Delgado for help from Wish Book, and has worked with the family for a long time. She said managing these medical challenges has “placed a considerable financial and emotional strain on the family.” Often, they must choose between what necessities to buy for Muñoz Delgado. They don’t qualify for food stamps and other social welfare benefits. Her husband recently returned to work after four years out of the workforce as a result of a workplace head injury. Wish Book readers could help Standarlyn and her family by providing a bath chair, Compleat milk (Standard Plant-based 1.4), wheelchair repairs and modifications, orthopedic shoes, and a gait trainer according to the organization. She also needs diapers (Prevail, Air Daily Briefs, Size 1) and a lightweight stroller (Convaid, MPN/Model: 903314). The family, which lives in Homestead, would also benefit from financial support to pay for food, clothing, medicine and physical therapy for Muñoz Delgado.

“The family remains resilient in their efforts to care for their child and build a stable life,” said Maria. “Their dedication, strength, and unity are evident in their day-to-day efforts to ensure she is cared for and valued.”

Read more at: https://www.miamiherald.com/living/wish-book/article297300654.html#storylink=cpy