Wish Book

Wish Book: As life with cystic fibrosis revolves around treatment, dreams of a job

Delmes Velasquez and her mother, Ines, look over family photos in their Homestead apartment. Ines has four children, two of whom have Cystic Fibrosis, a genetic, incurable and degenerative disease. Two of her kids are also blind. Her eldest daughter, Delmes, serves as the family caretaker.
Delmes Velasquez and her mother, Ines, look over family photos in their Homestead apartment. Ines has four children, two of whom have Cystic Fibrosis, a genetic, incurable and degenerative disease. Two of her kids are also blind. Her eldest daughter, Delmes, serves as the family caretaker. aharris@miamiherald.com

Delmes Velasquez stands in the shadow of her tower of medicine.

Velasquez, at four-foot-nine, must get up on her tiptoes to reach the top shelf of her pills and creams.

For every regular object in her bedroom — graduation cap, family photos, a calendar of rescue dogs — there are two pieces of medical equipment.

Velasquez, 24, of Homestead, has cystic fibrosis, a degenerative disease with no cure. CF has stolen her ability to breathe easily, to exercise, sleep well or live a normal life.

Cystic fibrosis is a genetic disease that causes a thick mucus to build in vital organs. For Delmes, it’s mostly in her lungs. For Ineyda, her younger sister, the disease rules when and how she eats. It also gave her diabetes before her 17th birthday.

Food is a major factor for CF patients. The disease limits intake of nutrients and makes it hard to put on weight. Velasquez’s mother makes her daughters high-calorie foods every day so they can maintain a healthy weight. Their favorites are fried chicken and El Salvadorian pupusas.

“110 pounds is a victory,” Delmes said.

But even that isn’t enough.

The sisters use feeding tubes to pump three bottles of vanilla Ensure plus — “every other flavor is gross,” she said — into their stomachs every night.

They have to be careful with the pumping speed. Too slow and they don’t get enough nutrients. Too fast and “your stomach is in for a rough night,” Delmes said.

With the tube tucked under her shirt, and the new antibiotic port in her arm hidden by a compression sleeve, she looks like a normal, shy young woman. She has pretty dark eyes, long brown hair and a charming smile.

“People tell me I don’t look sick. Some people tell me I’m just lazy,” she said. “They don’t understand. This disease, you can’t really see it.”

Her entire academic career is scarred by the disease. She was hospitalized every two or three months, and the absences finally caught up to her in her junior year of high school. She had to repeat the 11th grade and finally tell her school what was going on. Her stint at Florida Career College, part of her quest to find a job in the healthcare industry, was cut short by her medical problems.

Every few weeks, her family’s medical routine starts again.

At least two hours in advance, Velasquez gathers everyone and heads to the nearest bus stop a few blocks away. Depending on everyone’s health, the weather and family finances, they either walk or take an Uber for $4.

The group catches a bus (hopefully) to Metrorail and then to University of Miami Pulmonary, the only place they can see the specialists they need. But specialists say public transportation is the last place patients with such weak immune systems should be.

“We don’t recommend CF patients even being around other CF patients,” said Sherri Kelly, the family’s social worker from the University of Miami. “The doctor would recommend you wear masks.”

The family’s health coverage includes a respiratory therapist who tests the sisters’ lung capacity when he visits. For healthy people, lung capacity hovers around 80 percent. For Velasquez, a good day is 40 percent. If it’s worse than normal, the therapist puts her on an oxygen tank.

Sometimes that doesn’t work, and she needs to go to the emergency room.

“By bus, in that condition, it’s impossible,” she said. “I have to bring my tank with me.”

The portable oxygen tank is on loan from the therapist, who answers the late-night calls and drives Velasquez from her Homestead apartment to the hospital.

The Velasquez family arrived in Miami in the 1980s, transplants from El Salvador. Velasquez’s mother, Candida, doesn’t read or write, nor does she speak English. Of her four children, two have CF and two are blind. Doctors taught her how to administer her children’s rigorous home medicine routines with colors and pictures.

When the pills ran out, Candida had to find her way to and from the hospital on public transportation without the benefit of reading the signs.

Her husband, Ines, works a landscaping job from 5 a.m. to 5 p.m. six days a week to support the family. Candida does at-home child care for friends and family to make ends meet.

Three of the children receive monthly Social Security checks for their disabilities that cover utilities and rent. The family’s Medicaid and assisted CF waiver through the state covers most of their specialized care.

That doesn’t leave room for anything else in the family budget, Delmes Velasquez said. Her wish is for a job to support her family, and to earn enough to buy a used car to take her family to their medical appointments in a safer way.

Her specific requirements for a job have made it impossible to land one, she said. She needs to work in a clean environment, with no heavy lifting and a flexible schedule to accommodate her role as caretaker of her blind siblings.

“Their lives revolve around medical appointments,” Kelly said. “When Delmes is in the hospital, everything here is at a standstill.”

She can’t make too much money or the family will lose their Medicaid and Social Security checks.

Delmes has her learner’s permit, but she’ll need to find money for driving lessons, as well. Her local course costs $60 for four hours of training.

The only thing Delmes really wants is for her family to be safe, happy and healthy as they can be.

“I just want to take care of my family,” she said.

▪  How to help: Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. To give via your mobile phone, text WISH to 41444. For information, call 305-376-2906 or email wishbook @MiamiHerald.com. (Most requested items: laptops and tablets for school, furniture, accessible vans.) Read more at MiamiHerald.com/wishbook

  Comments