Girl’s parents keep music playing as they worry about her dire needs

Photography by Greg Lovett

Nominated by Clinics Can Help

A children’s song flows from a young girl’s bedroom and fills her family’s Boca Raton town home.

“Stand up, turn around, sit down!” goes the song that plays on a YouTube video in which kids act out the lyrics with singer Patty Shukla.

Amanda Silva, the 11-year-old girl watching the video from her bed, loves this song. She smiles and waves her arms, chasing the rhythm. Unlike the children in the video, Amanda cannot do much beyond that. The spirited girl is stricken with cerebral palsy, a condition she’s battled since shortly after birth.

But the music is liberating. It energizes and it soothes her, and her family knows this. Her parents, Lidia and Eduardo Da Silva, and her older brother, Nicholas Silva, 12, entertain Amanda by playing music at home. Whether it’s a YouTube video, a smart TV tune or her brother’s flute practice, there’s always something playing — and Amanda seems to love it.

“She’s a true Brazilian,” says Amanda’s mother. “She loves music and dancing, and she’s always having a good time.”

Lidia and Eduardo, originally from Brazil, want to give their daughter the best life possible, but as Amanda grows, so do the family’s struggles.

Amanda Silva, 11, smiles before her mother takes her to school.

The girl was born with a rare congenital disease called hypoplastic left heart syndrome, a birth defect in which one side of her heart did not develop as it should. At 1 week old, Amanda underwent major surgery. Several hours later, she slipped into a coma that further deteriorated her condition. In the years since, Amanda has survived several life-threatening surgeries.

Today, Amanda isn’t able to walk on her own or speak. She can’t feed or bathe herself, use the bathroom alone, sit or stand on her own. She must be fed through a feeding tube.

The adults in Amanda’s life are scrambling to adapt to her growing needs. At 54 pounds, she is becoming too heavy for either of her parents to carry. Their home is not equipped for a person with Amanda’s disabilities. Neither is the family car. As a result, transporting the girl in and out of the house or moving her within the home is becoming difficult, both physically and emotionally.

Luckily, there’s a full-time nurse on hand to help the family. Marlene St. Val, who has taken care of Amanda for six years, drives the girl to school and therapy.

“We are BFFs,” says St. Val, who often swings by the house to visit Amanda on her days off. “When I walk inside the house, she’s all smiles.”

St. Val says Amanda loves watching kids play, even if she can’t join them.

The girl’s days are structured around her school and therapy sessions. Amanda attends J.C. Mitchell Elementary School in Boca Raton from 7 a.m. to 2 p.m. She also has in-house occupational therapy after class on Mondays, and speech and physical therapy on Tuesday and Thursday afternoons. On Fridays after school, she also goes to outpatient therapy for physical movement and speech.

But beyond the scheduled appointments, there’s another kind of therapy that Amanda enjoys: the outdoors.

“Amanda wants to be outside. As soon as she sees the door, or sees anybody going outside, she starts making noises,” says her father, Eduardo. “As soon as we take her outside, she gets very happy. We want to do this [take her outside] more for her.”

AMANDA’S WISH

Amanda Silva, a music-loving 11-year-old girl, is stricken with cerebral palsy, a condition she’s battled since shortly after birth. She isn’t able to walk or speak, feed or bathe herself. The adults in Amanda’s life are scrambling to adapt to her growing needs. At 54 pounds, she is becoming too heavy for either of her parents to carry. Their home is not equipped for a person with Amanda’s disabilities. Neither is the family car. The family would benefit from a van that’s fully wheelchair-accessible, a front-door ramp, a ceiling-track patient-transfer system at home and a new bed for Amanda.

Nominated by: Clinics Can Help, 561-640-2995

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