Wish Book

This disabled teen can’t even leave home. One thing would help her spread her wings.

Little Havana teen with severe spina bifida visits the Miami Seaquarium

On January 3, 2019, Wishbook recipient Valentina Corpas, 13, who was born with severe severe spina bifida, was offered by Miami Seaquarium rare opportunity to leave her small apartment and enjoy a fun outing. https://secure.jotformpro.com/MHBackIssu
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On January 3, 2019, Wishbook recipient Valentina Corpas, 13, who was born with severe severe spina bifida, was offered by Miami Seaquarium rare opportunity to leave her small apartment and enjoy a fun outing. https://secure.jotformpro.com/MHBackIssu

Like any newly minted teenager, Valentina Corpas is eager to spread her wings. Bright and blessed with a spark-plug personality, the honor student would love to meet her friends for an outing, visit Disney World or Miami Seaquarium, even just roll along South Beach and see the sand and water close up.

But she can’t. She never has.

Valentina, 13, is pretty much confined by difficult circumstances and a severe physical disability to the small Little Havana apartment she shares with her mom, Zoraya Monsalve. There she receives physical and occupational therapy and, twice a week, teachers from Miami Dade County Schools’ Brucie Ball Educational Center, where she is on the seventh-grade honor roll. Valentina, who is fully bilingual in Spanish and English, says the latter is her favorite school subject.

She has big aspirations. When she’s not studying, reading or painting, Valentina loves to try out makeup — she already has a pro’s touch. She would like to combine her avocations in a career in the arts and media as an actress, cosmetologist and television host.

And as to her disability — she was born with a severe form of spina bifida that left her back acutely deformed — Valentina says it could even play to her advantage. Why should film and TV producers hire actors who pretend to be disabled? She could play a disabled character who is good, or evil, with real authenticity, she says.

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How to help: Wish Book is trying to help this family and hundreds of others in need this year. To donate, pay securely at MiamiHerald.com/wishbook.

But what she wants above all, she said, is simple: “To have my independence.”

Valentina, who was nominated for the Miami Herald Wish Book by Carrfour Supportive Housing, has already overcome far more than most 13-year-olds. Five risky surgeries, the last of which failed to correct her fragile spine and hips. Painful muscle spasms that come and go and doctors can do little about. The need to wear an uncomfortable corset-like brace at all times. Urinary incontinence that requires catheterization every four hours. An inability to take more than a few steps even with a walker.

Two years ago, because her muscles and spine are weak and can’t properly support her body, her lungs collapsed and she needed emergency surgery. Because of the pressure on them, her lungs work at 40 percent of their normal capacity.

Through it all, Valentina has kept a radiantly positive disposition, says her longtime home health aide, Marisol Pozo, who considers herself the teen’s “second mom.”

“She is a super-intelligent girl. She is a shining star,” Pozo said. “She has a bright future, in spite of her condition, if she has the opportunity to move around on her own, because she is a warrior.”

Things have improved for Valentina since she received a marvelous electric wheelchair last year through Florida’s Medicaid program. The wheelchair allows her to move around the apartment without assistance, to lift her legs and change position, to recline when she needs to rest and, every four hours, when she needs to have the catheter changed. It’s also custom-fitted to provide critical support to her back and hips.

There’s only one problem. The wheelchair is bulky and heavy. It doesn’t fit in her mom’s minivan, which Monsalve scrimped and saved to buy, used, out of her own small disability check and small child-support payments from her ex-husband, Valentina’s dad.

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Zoraya Monsalve, left, looks back at her daughter, Valentina Corpas, 13, who has severe spina bifida and uses a custom electric wheelchair, however the chair does not fit the family car, so she is essentially homebound. Valentina is hoping for the retro-fitting a ramp on the family SUV or purchasing a new vehicle that already equipped with a wheelchair ramp. The pair were photographed on Thursday, December 20, 2018. Carl Juste cjuste@miamiherald.com

That means, effectively, that Valentina can rarely leave home except for medical appointments with one of the 17 specialists that follow her unusually complex case. Her ordinary folding wheelchair, which Valentina uses on the rare occasions she ventures out, does not provide the needed support and is painful for her to sit in. Moreover, her doctors at Nicklaus Children’s Hospital say it may even be causing further damage, said Valentina’s caseworker at Carrfour, Karen Corea. That rules out any outings for leisure or recreation.

“We go out very little. She just stays here locked up,” Monsalve said. “We’re always here. She has never even been to a park.”

Valentina and her mom want to trade in the minivan for one equipped with a lift or ramp and a secure spot to lock in the wheelchair. That would make it easy for the first time in her life to leave home and open up the world to Valentina, her mom says.

But they can’t afford that. Valentina and her ex-husband lost everything they had — cars, their home and a small concrete-stamping business — in the economic collapse a dozen years ago and because Monsalve stopped working to care for Valentina after her difficult birth. For the first few years of the girl’s life, she said, she practically lived at the children’s hospital.

The emotional and economic stress broke up her marriage and left Monsalve suffering from a disabling chronic and severe anxiety. Six years ago, after the divorce, their home went into foreclosure and Monsalve and Valentina were on the verge of homelessness.

Monsalve says she was literally standing in an empty house with bags in hand and her daughter in a wheelchair with nowhere to go except a shelter when Carrfour stepped in with a life-saving offer of an apartment in a new building in Little Havana. But things are still extremely tight. Their disability checks barely cover living expenses, and Carrfour must provide them food aid.

As she watched Valentina blossom in spite of her enormous physical obstacles, Monsalve said she began thinking what would become of her daughter if she were no longer around to help.

“If I’m gone, I want my daughter to have everything she needs, because everything is a challenge for her,” she said.

Their idea is that with a properly outfitted minivan, once Valentina is ready to start driving in a couple of years, hand controls and removal of the driver’s seat will make it possible for her to head out on her own. The mere prospect of it makes the teen bounce in her wheelchair and clap her hands with pleasure.

“That for her would be a blessing, so she could be exposed to the world, because she has always been secluded,” Pozo said. “It would give her wings, it would give her legs.”

“It would give me wheels!” Valentina joked.

Valentina does have just one more tiny request. She loves pink. She dresses in shades of rose and pink. Her computer has a pink case. Her dog’s bowl is pink. Even her wheelchair has pink fenders.

So if generous donors do get them the van of Valentina’s dreams, she says, “I would like for it to be pink.”

How to help: 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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