Make us your home page
Instagram

Today’s top headlines delivered to you daily.

(View our Privacy Policy)

Family copes with little girl's muscle weakness illness

CARROLLWOOD

Lucia's nursery is the first thing visitors see upon entering the Ferlita home. • Pale pinks and yellows cover every surface. A closet overflows with ruffled dresses. And toys are strewn about. • In the middle sits 1-year-old Lucia, her brown hair tied in pigtails, purple polka-dotted bows affixed to each one. • Her face is expressionless as she watches cartoons. She doesn't seem to notice the cords or tubes sprouting from her 23-pound body, nor the soft, constant whoosh of the ventilator that helps her breathe. • But when her mother sings, her eyes light up. • Before the last strain of Twinkle, Twinkle, Little Star, Lucia signals for more, using sign language to communicate. • Lucia was born with a disorder that results in muscle weakness. It affects her lungs, body movements and facial expressions. She can't eat or walk so she is pushed in a wheelchair and fed through a tube. • The ventilator makes it impossible for her to speak. Instead, she uses sign language to say the few words she knows: Mom. Dad. More. • Despite extensive genetic testing, doctors haven't been able to pinpoint the cause of the disorder or why it's happening, said Lucia's mother, Lisa Ferlita. Without a diagnosis, there is also no prognosis.

They do know one thing, though. They are the same symptoms their son, Vincent, suffered from. He died in 2011 at 6 months.

"The autopsy didn't show anything," said Ferlita, a former dance teacher who now stays at home. "We were told that it was most likely a chromosomal fluke."

So the couple decided to have another child.

Lucia appeared healthy at first. But at 10 weeks, she stopped eating. Then, a procedure to obtain a muscle biopsy left her unable to come off oxygen.

The realization that Vincent's disorder was developing in Lucia was devastating for Ferlita, 37, and her husband, Russell Ferlita, 35.

"All the feelings of the night when we lost our son came flooding back," Lisa Ferlita said. "I remember being on the floor of a public bathroom sobbing because I just couldn't deal with it."

But there have been small victories.

Lucia celebrated her first birthday in October. She can smile, subtly. Her mind seems to be developing normally.

"She can't drop a toy and go get it like other children her age," Lisa Ferlita said. "But, she is interactive."

Lucia spends most of her days at home. The process to take her anywhere is complicated and time-consuming, requiring the transfer of vital equipment.

An in-home nurse helps care for Lucia 18 hours a day, allowing for a few private moments for Ferlita and her husband to have alone with their daughter. A physical therapist and speech therapist come to the house each week.

The couple's private insurance, through Russell Ferlita's job as an engineer, covers much of the costs. They count on Medicaid to help cover the gaps.

Doctors continue to do genetic testing, Lisa Ferlita said, and are consulting with physicians around the world in an effort to understand Lucia's condition.

The biggest fear is the unknown.

"We have no idea how the disease will progress because we don't know what it is," she said. "Knowing only the outcome of Vincent, we are petrified every moment for Lucia."

The couple would also love to grow their family, Ferlita said, but another child is out of the question until they know whether the disorder can be prevented.

For now, the couple is focused on giving Lucia a wonderful life and hoping an answer will come along soon.

"We hope she grows out of this," Ferlita said. "But, until then, we just want her to be happy."

Shelley Rossetter can be reached at srossetter@tampabay.com or (813) 226-3401.

. fast facts

To help Lucia

Visit youcaring.com/

medical-fundraiser/

for-the-love-of-lucia/86229.

Family copes with little girl's muscle weakness illness 10/30/13 [Last modified: Wednesday, October 30, 2013 3:43pm]
Photo reprints | Article reprints

© 2017 Tampa Bay Times

    

Join the discussion: Click to view comments, add yours

Loading...
  1. No easy answer to the Dunedin parking question

    Local Government

    DUNEDIN — Nothing has been more divisive in this city than the issue of paid parking.

    A server at Cafe Alfresco (background) claims Dunedin's new paid parking has cost him money. Dunedin began a paid parking last October. Nine months in, residents, business owners and city officials all share mixed feelings. In October, when the one-year program ends, the city will have until November to come up with another solution to its parking woes, or continue the paid parking program at the risk of angering locals.JIM DAMASKE   |   Times
  2. Tampa Bay Lightning, Amalie Arena to host job fair today

    Business

    TAMPA — The Tampa Bay Lightning and its home, Amalie Arena, are hosting a part-time job fair from 3 to 6 p.m. today on the Promenade Level of the arena. Available positions include platinum services, parking attendants, event security, housekeeping, retail and many other departments.

    The Tampa Bay Lightning and AMALIE Arena is hosting a part-time job fair on Thursday, Aug. 17 on the Promenade level of the arena.
  3. Nearly 1 in 4 Tampa Bay homeowners considered equity rich

    Real Estate

    If your home is worth at least 50 percent more than you owe, you're rich — equity rich that is.

    About one in four Tampa Bay homeowners are considered "equity rich." [Associated Press file photo]
  4. Trump strategist Steve Bannon: No military solution in North Korea

    National

    BRIDGEWATER, N.J. — President Donald Trump's chief strategist Steve Bannon says there's no military solution to the threat posed by North Korea and its nuclear ambitions, despite the president's recent pledge to answer further aggression with "fire and fury."

    Steve Bannon, chief White House strategist to President Donald Trump, has drawn fire from some of Trump's closest advisers. [Associated Press]
  5. Rays have their chances, but end up with another loss (w/video)

    The Heater

    TORONTO — The litany of games the Rays have given away this season is long enough, arguably too lengthy. So the only way to get to the postseason is make up for some of those losses by grabbing some wins when the opportunity is presented, especially at this time of year when the margin is diminished and the stakes …

    Associated Press