Both girls have serious medical issues, but this family looks to the future with hope

Imagine your 3-year-old is puking, constantly falling over and forgetting how to walk. You take her to the doctor, who sends you to the emergency room. And then in just two days, you’re in the operating room. Your baby, the joy of your life, has been diagnosed with brain cancer.

In January 2022 this was Mercedes Lobo’s reality.

She had left Venezuela with nothing but her two daughters and a few bags of belongings to give her older child, 9-year-old Paulina, critically needed resources. But then she discovered her younger daughter, Salma, was deathly ill.

“Mercedes’ case is powerful,” said Sandra Muvdi, founder of the Jessica June Children’s Foundation, who has worked with the family.

Paulina was born with a disease called amniotic band syndrome, which occurs when fibrous bands of the amniotic sac get tangled around a developing fetus. The baby was diagnosed in utero, when Lobo was three months pregnant.

Paulina was first treated with a fetal operation that was supposed to release the constriction. The surgery helped, but didn’t cure the problem.

“The doctors didn’t know if my daughter was going to be born with a right hand,” said Mercedes.

A few months later, Paulina emerged from the womb without several fingers. She went through 17 surgeries to help improve function, but needed more than the Venezuelan doctors could do. On Sept. 22, 2021, Mercedes decided to take Paulina and Salma from their home in Barquisimeto, about 220 miles west of Caracas, to Miami, where she hoped for better care. John Hernandez, Mercedes’ husband and the girls’ father, stayed behind.

Their journey was rough. They took a road trip to Bogotá, a plane to Mexico, then walked through the town of Piedras Negras to the Texas border. They were detained in a family center for about three days, but on Sept. 30 of last year, they were granted entrance to the United States.

Once they made it to Miami, the family stayed with a childhood friend of Mercedes’, Candy Gonzalez.

“She is like a sister and I’m grateful she lent us a hand,” Mercedes said.

After a month in Miami, Salma began vomiting. Mercedes rushed her to the emergency room, but doctors sent her home, saying it was just bacteria in her stomach.

Then in November, Salma began to act differently, losing her balance and forgetting how to walk. Mercedes realized these were signs of a neurological problem but couldn’t afford the cost of a doctor’s visit. She had to wait until January when the insurance offered by the government to pay for her older daughter’s medical needs kicked in.

On Jan. 12, 2022, Mercedes took her to a pediatrician, Dr. Amada Romando Silva.

“This is an emergency,” she remembers Silva saying.

Mercedes took Salma to the emergency room at Nicklaus Children’s Hospital the same day. Within 24 hours they discovered the cause was medulloblastoma — brain cancer.

“My poor baby,” said Lobo. “When the doctor showed me her scan, I could see the whole tumor.”

Salma had to go through a seven-hour surgery to remove the cancer. Her mom was scared. She prayed.

Doctors removed 98% of the principal tumor and began to treat the last 2% along with two other small tumors with chemo.

Salma has since had eight chemo treatments and three bone marrow transplants. Her most recent chemo session was in September, and on Nov. 3 she had an MRI to see if the tumor was gone. Only a fraction, one the size of a grain of rice, was left. The doctors are unsure if it is dead cancer tissue or still active, but they will treat it with radiation.

The night before the MRI a surprise arrived. Hernandez, Mercedes’ husband and the girls’ father, was reunited with his family after finally receiving permission to visit.

“This brought us joy,” said Mercedes. “Seeing my girls’ reaction brought me to life again.”

The family has been through a lot and is still fighting. They need help paying their bills and buying a car to commute to the hospital. They have raised about $4,000 through GoFundMe. The Jessica June Children’s Foundation also contributed. But that hasn’t been enough.

“My family is going through a tough time,” says Mercedes. “As parents, you never want to see your children suffer. We need help. Our daughter’s battle is not over.”

How to help

To help this Wish Book nominee and the more than 100 other nominees who are in need this year:

▪ To donate, use the coupon found in the newspaper or pay securely online through www.MiamiHerald.com/wishbook

▪ For more information, call 305-376-2906 or emailWishbook@MiamiHerald.com

▪ The most requested items are often laptops and tablets for school, furniture, and accessible vans

▪ Read all Wish Book stories on www.MiamiHerald.com/wishbook

This story was written for Florida International University’s South Florida Media Network.