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Teen with lung disease wants to go to the beach

December 1, 2018
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This Nov. 21, 2018 photo shows Rebekah Lewis, 17, at her North Beach home in Miami. Rebekah, who has a life-threatening lung disease, is connected to her respirator and can not visit the beach due to the lack of mobility. She is hoping for all-terrain wheelchair that will allow her access to the beach and the outside world. (Carl Juste/Miami Herald via AP)

MIAMI (AP) — Rebekah Lewis longs to sit on the beach and take pictures of the waves crashing onto the shore. She yearns to watch the sunrise over the water and feel the salty air fill her struggling lungs.

The beach is so close, just blocks from the North Beach apartment that 17-year-old Rebekah shares with her mother and younger sister. But for Rebekah, who has a life-threatening lung disease, those blocks might as well be miles. Without a motorized scooter and a beach wheelchair, neither of which her family can afford, Rebekah is mainly confined to her home.

Sometimes even talking is a struggle. Rebekah has to remove the tubes pushing oxygen into her nostrils in order to speak, taking shallow gulps of air between words. Forget about walking on the sand.

Rebekah is also tethered to the oxygen machine that sits in the corner of her bedroom, a machine whose long green tube only stretches far enough for Rebekah to move around the house. Rebekah has a portable machine, but it delivers only little puffs of air, not nearly enough to compensate for her medical conditions: pulmonary arterial hypertension, a constriction of the arteries in her lungs, and congenital heart disease, an abnormality in the structure of her heart. Rebekah is hoping she can get a continuous-flow portable oxygen machine, which would allow her to move around more easily.

Another tube pumps medicine directly into Rebekah’s stomach. That tube isn’t attached to a machine, but it restricts Rebekah’s movement in other ways.

“A lot of the times I can’t get up and walk, because of this,” Rebekah said, lifting up the corner of her shirt to expose a bandage covering the tube. “It hurts really bad.”

Rebekah tries to come up with ways to stave off the boredom when she’s stuck at home, but sometimes the tubes get in the way of even the simplest entertainment. When Rebekah spins around in a swivel chair, the oxygen tube gets caught in the wheels. Rebekah jokes with her mom that if she could make a wish, it would be for a cordless oxygen machine.

That’s how Rebekah stays upbeat, joking with her mom and finding ways to make the best of her situation. When doctors recently told Rebekah she could no longer eat any foods with salt or oil, for example, she started pouring hot sauce on everything she ate to give it flavor.

“She’s really, really tough. She’s the strongest person I’ve ever met,” Cohen said.

Rebekah’s strength has been tested a lot lately.

Her condition is getting progressively worse, and she has been hospitalized three times over the past few months. On one occasion, Rebekah had to be resuscitated after surgery; on another, a simple cold left her fighting for her life.

“We didn’t even know if she’d be able to walk again or get out of bed because as soon as she would try to walk her oxygen would just drop,” Cohen said. “We really didn’t know if, because it’s a progressive disease, she had progressed to that point where there’s no return.”

This is the fear Cohen has lived with since Rebekah was first diagnosed at the age of 12. The family was living in Texas at the time and Cohen realized something was wrong when, while running one day, Rebekah turned blue and started throwing up. Cohen had been working at Walmart and studying for a computer science degree, but after Rebekah got sick, caring for her became a full-time job.

“For a long time, you’re just hopeless and life is black and then you decide you better get up and fight,” Cohen said. “So that’s what we do. We’re always fighting to keep her alive and for her to live.”

At first, Cohen was afraid to go to sleep at night, afraid that her daughter would die in her sleep. Cohen would stay up until 4 a.m. watching Rebekah’s chest rise and fall. Now Rebekah has a machine that monitors her heart rate and breathing at night and beeps to alert her mother to any danger. The family’s life still revolves around medical appointments and nurses’ visits, however. Cohen knows that at any moment they may have to drop everything and rush Rebekah to the hospital.

“It’s hard because one minute you’re living your life and you’re doing your normal routines and then you have to just give it up in an instant and then you’re living in the hospital,” she said. “It’s just bouncing back and forth all the time.”

The family left their home in Corpus Christi, Texas, last year after Hurricane Harvey destroyed their roof. They had been planning to move in search of better medical care, but Harvey pushed them to leave before they’d found a new place to live. As the family began driving east away from Texas, Hurricane Irma moved toward Florida. Cohen and her daughters got stuck in Louisiana for two months, where they lived in hotels.

As the family waited in Louisiana, Rebekah’s health got worse. She didn’t have an elevated bed, which she needs in order to sleep, so she had to prop herself up on pillows. Her health “took a major hit,” Cohen said. In Texas, Rebekah had been able to walk on her own, but by the time the family made it to Miami Beach, she was struggling to walk. For the past few months, Rebekah has relied on a wheelchair.

It’s hard for Rebekah to propel herself in a regular wheelchair, however. A motorized scooter would allow her to be more independent, and a beach wheelchair would enable her to sit by the water.

“She loves the outdoors and the salt air is good for her lungs,” said Sherri Kelly, a social worker at the University of Miami Miller School of Medicine Pulmonary Division.

Rebekah also needs a stationary bike, which her respiratory therapist recommended, and the family could use gift cards for gas, food and clothing as well as help repairing their air conditioner. Rebekah is supposed to go to respiratory therapy three times a week, but Cohen struggles to pay for gas and can’t afford parking at Jackson Memorial Hospital so the family has stopped going to the appointments.

Rebekah and her 13-year-old sister, Anna, would also like to have a TV in their room and a desk for Anna to do homework.

Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. 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

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Information from: The Miami Herald, http://www.herald.com

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