Mother of crash victim is raising her baby again, 31 years later

Adrienne DiGiovanna, 14, hugs her mother Angel DiGiovanni, who suffered a traumatic brain injury in a car crash.

Photography by Greg Lovett

Nominated by Coalition for Independent Living Options

Caterina “Cathy” DiGiovanni raised three beautiful children and they were still close. She was a good Italian grandmother, spoiling everyone. She had good friends. She’d even saved a little money for retirement. Life was good.

But it didn’t stick. Instead, she’s raising her daughter, Angel, 31, for a second time. Angel suffered a traumatic brain injury in a two-car collision that killed another driver just a few weeks into 2017. She was a passenger in one of the cars. The accident left her unable to care for herself. It’s unlikely she’ll ever be able to live on her own again.

Doctors wanted to put Angel in a bed in a nursing home. When she left the hospital, she was nonverbal and needed a wheelchair, a feeding tube and a menu of meds. Her life had been rewound to infancy, but Cathy said, “We’re Italians, and we take care of our own.”

A photograph of Adrienne DiGiovanni and her mother Angel before Angel suffered a traumatic brain injury in a car crash.
A photograph of Adrienne DiGiovanni and her mother Angel before Angel suffered a traumatic brain injury in a car crash.

Cathy got the training she needed to care for Angel, and soon there was a hospital bed in the middle of her Loxahatchee living room. With the help of friends and family, Cathy adjusted to the demands of being a full-time caregiver, and Angel has done well. She is talking and laughing, even walking around.

But Angel’s care is just one facet of Cathy’s challenges. Money, of course, is an issue. Her retirement nest egg has disappeared. The driver’s inadequate insurance covered very little of Angel’s $700,000 hospital bill. The therapy Angel needs must be paid for out-of-pocket, and some providers have gone unpaid. Navigating the bureaucracy to get services is complicated and time-consuming, but Cathy keeps trying.

She worries about her granddaughter, Angel’s daughter, Adrianne, who has had to grow up fast. Adrianne, now 14, desperately misses her mom as a vibrant, beautiful, funny, loving woman.

There are small victories. Cathy has been able to go back to work full-time, running the computer lab at the middle school her granddaughter attends. She loves her work. But most of the money she earns goes to pay for the nurse who comes in to care for Angel.

“Someone is always here,” says Cathy, who also relies on good friends for help. “Angel is never alone.”

Angel goes to speech and occupational therapy, which seem to be working though her progress is slow. The feeding tube is gone and Angel eats homemade bean soup or stew, made from scratch on the weekends.

She can walk unassisted, thanks to “Dr. Matt,” a chiropractor who has treated Angel without demanding cash up-front.

Cathy thinks that her daughter’s strong will and stubborn nature are what keeps her going, and her Catholic faith has helped get her through.

“I just feel like Angel has unfinished business,” says Cathy. “That’s why God didn’t take her.”

CATHY’S WISH

Cathy DiGiovanni’s daughter, Angel, 31, sustained a traumatic brain injury in a car accident in 2017. After weeks in a coma, Cathy brought Angel home where Cathy has provided 24/7 care, with help, ever since. Angel came home like an infant, and now she’s like a toddler. No one can predict how much progress she’ll be able to make with therapy. Cathy needs money to pay for therapy. They’ve already been turned away. Angel is still partially paralyzed on one side, one eye is damaged, her broken teeth have never been fixed. The house wasn’t designed for a disabled person and some work (grab bars and ramps and railings) is needed to make the home safe. The bathroom tub was torn out to put in the shower they needed, and the room needs some repairs. They also need an accessible toilet so they can teach Angel to use it.

Nominated by: Coalition for the Independent Living Options, 561-966-4288

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Young brothers bonded by artistic talent and a grim diagnosis

Edward Horton puts shoes his son, Jacob, 9, while his wife does the same for their son Ariel, 11, in their home in Boca Raton. These brothers are living with Duchenne Muscular Dystrophy, a terminal neurological disease.

Photography by Greg Lovett

Nominated by 211 HelpLine

The Horton boys take immense pride in their artwork, showing them off to anyone they meet.

Ariel, 11, shrieked in excitement when a reporter recognized his pencil drawing of Abel Tesfaye, better known as the Canadian rapper The Weeknd. He signed the portrait in blue crayon, “Your 1# fan, Ariel.”

The elder brother likes sketching from memory, while Jacob, 9, culls cartoon characters from the screen in marker. For Jacob’s birthday, his family planned a trip to the Crayola Experience. He said a Jacob crayon “would be green. Like the average green.”

The brothers are bonded by blood and artistic talent. They were also both diagnosed with a neuromuscular disease called Duchenne muscular dystrophy, which weakens muscles over time.

They know they have an illness called muscular dystrophy, but they sometimes struggle to understand why they have it.

“‘Why are your calf muscles bigger than other kids?’” Ariel says one classmate asked him. “It’s like he didn’t know what that is.”

“A lot of people don’t, capara,” Liat responds with a Hebrew term of endearment. “You’re allowed to turn around and tell them, ‘I have muscular dystrophy.’”

A Duchenne muscular dystrophy diagnosis happens once in every 7,250 males. It is incurable and fatal, a detail the boys don’t know.

“How can you do that to kids?” Liat Horton, their mother, says of keeping this secret. “It will take away their innocence.”

Ariel takes his medication.
Ariel takes his medication.

The Hortons decided to test Ariel for autism when he was 4, and the pediatrician noticed his large calf muscles, a condition known as pseudohypertrophy. A blood test confirmed the disease, and Jacob was also tested and diagnosed when he was 1.

It was through that diagnosis that Liat learned she was a “carrier by accident,” meaning no one else in her family has this mutation in their genes. It’s linked to the X chromosome.

“It’s kinda sorta like having to rely on one kidney instead of two,” explains Eddie Horton, the boys’ father and an occupational therapist. “If you’re a woman and you have two X chromosomes, the body relies on the good X chromosome and ignores the other X chromosome. When you’re a boy and you have one Y chromosome and one X chromosome…”

“Then it gets the bad one,” Liat finishes.

They make do with the layout of their home in Boca Raton, but it needs to adapt to the boys’ changing needs like wheelchair ramps, a Hoyer lift and improvements to their bathroom and bedroom. They travel to Orlando every few months for treatment, which adds to the piling medical bills.

Jacob is regressing faster than his older brother and relies on a wheelchair to get around. It also means Liat or Eddie needs to lift him into the shower and into the car whenever they go to school. Though Ariel can still walk, he gets tired easily.

Despite knowing what the future will eventually hold, the Hortons remind Ariel and Jacob how much they are loved and how talented they are. One day, Liat hopes to introduce her boys to other kids diagnosed with Duchenne to let them know they’re not alone.

“We just try to be happy,” Liat says, “and live every day the best that we can.”

ARIEL AND JACOB’S WISH

Ariel and Jacob Horton, ages 11 and 9, were diagnosed as toddlers with a fatal muscle-weakening disease called Duchenne muscular dystrophy. The disease has progressed faster in Jacob, leading him to rely on a wheelchair more than his brother. Their parents, Liat and Eddie Horton, make do in their Boca Raton home, but upgrades are required to better meet the boys’ needs. Ariel and Jacob need hospital beds with air mattresses that will prevent bed sores and a Hoyer lift to help them out of bed. Three portable wheelchair ramps will help them when going to and from school. Broken tiles and drainage issues have to be resolved in the boys’ bathroom, and building supplies such as drywall and baseboards are needed to fix issues in their wheelchair-accessible room. Gift cards for food and other basic necessities would help relieve financial constraints for the family.

Nominated by: 211 HelpLine, 561-533-1065

To make a monetary donation, click the Donate button. Please do not mail cash or merchandise.  If you have merchandise to donate, please contact the agency directly.

Brave baby Quinn fights leukemia as family rallies around her

Nick Harris helps his sister feed Quinn.

Photography by Greg Lovett

Nominated by Kids Cancer Foundation

Quinn McBride, a sunny and determined soul, has battled leukemia for most of her life. She’s 15 months old.

It was her mother who suspected there was something seriously wrong with the baby when supposed mosquito bites would not heal. At first, doctors thought Quinn had a relatively harmless virus known as CMV, but her mother, Lisa Harris, would not accept the diagnosis — not when the infant’s condition worsened and lingered for months.

At the time, Harris worked long shifts as a hospital scrub tech. Having moved out of her childhood home at age 21, she had carved out an independent life, working two jobs to put herself through school. She was a single mother, intent on providing for her baby. But financial survival was the furthest thing from her mind as she traced the purplish blotches covering Quinn’s legs.

Harris, now 29, recalls the desperation: “I’m thinking, ‘My baby’s sick and no one knows what’s wrong with her.’”

It was after Harris took the baby to a dermatologist and requested a biopsy that she got the stunning news: Quinn had infantile leukemia. She was just 7 months old.

For the next two months, mother and child would live at the hospital where Quinn underwent aggressive chemotherapy treatments. The chemo made a mess of the baby’s immune system, leaving her in a state so fragile that a dim new normal set in. Harris lives in a state of constant guard:

“If she gets a fever, she could die in three hours,” she says of her daughter.

There would be no outings, no play dates, and very few (if any) visitors.

Lisa comforts her daughter.
Lisa comforts her daughter.

Then came a rigorous new feeding schedule — small amounts of formula poured into Quinn’s belly via a feeding tube every couple of hours.

This is how it must be for the next few years, a baby’s life punctuated by intense monthly chemo sessions.

Harris has surrendered to the delicate routine of tending to her baby day and night. To care for Quinn full time, she had to leave her job in February and return to her parents’ home in Lantana, where she and the baby sleep in her old bedroom. She now relies on them for all the baby’s necessities: diapers, formula, clothes, toys. Fortunately, Medicaid covers Quinn’s medical costs.

The young mother is also frustrated that she’s unable to contribute to her child’s material needs. She does not want to be a strain on the household, considering her parents work hard to stay afloat. (Her father operates a tree-trimming service and her mother does secretarial work.)

But all of that is manageable. What is much harder is keeping her daughter strong enough to endure the treatments. This means daily booster shots, calculated feedings and maintaining a bubble-like environment.

Here was the baby that had come so easily after less than two hours of labor. Quinn entered the world as a 7-pound, 14-ounce infant on Aug. 27, 2017. She was perfect.

Now, some days Harris feels like she’s stuck in sand, unable to ease her daughter along to the expected milestones of childhood.

“I just want her to start crawling. I want her to start walking. I want her to start talking. But she’s on the strongest chemo. It’s going to delay her.”

QUINN’S WISH

Quinn McBride, a sunny and determined soul, has battled leukemia for most of her life. She’s 15 months old. For the next few years, the baby must undergo aggressive, in-hospital chemotherapy treatments that make a mess of her immune system. Her single mother had to quit her job as a hospital scrub tech and move back to her parents’ home to care for Quinn round-the-clock. The family could use help in paying for basic expenses: diapers, food, baby goods, car and gas bills.

Nominated by: Kids Cancer Foundation, Royal Palm Beach, 561-371-1298

To make a monetary donation, click the Donate button. Please do not mail cash or merchandise.  If you have merchandise to donate, please contact the agency directly.

A warrior princess in pink, preschooler battles cancer

Ruth Pierre holds her daughter Calliah while nurse Zahyra Mejias cleans the port on her chest at Kidz Medical Services in West Palm Beach.

Photography by Greg Lovett

Nominated by Pediatric Oncology Support Team

It began with a juice box. A Capri Sun, to be specific. Four-year-old Calliah Pierre, normally an energetic little girl who loves pink, purple and Doc McStuffins, began complaining of stomach pain in June. She could barely eat or drink, and she had trouble finishing her juice.

That raised a red flag for her parents, Calvin and Ruth.

“Most kids ask for two or three Capri Suns,” Ruth says. “The fact that she wasn’t even finishing half a Capri Sun. I was like, ‘Something’s not right.’”

Calliah’s parents made several trips to the doctor with their older daughter — their younger daughter, Carissa, is 2 — and were told Calliah probably was suffering from constipation. They were prescribed medication and sent home.

But once back at the family’s Loxahatchee home, Calliah didn’t get better. Then Calvin, 36, felt a lump on his daughter’s stomach. He brought her back to the doctor, who advised him to take Calliah to the emergency room right away.

Ruth, 30, who was diagnosed with sickle cell disease at age 16 and battles chronic pain, was in the hospital and not able to join them.

A CT scan confirmed Calliah had a tumor in her abdomen, and further tests led to a diagnosis of stage 4 neuroblastoma, a rare, aggressive cancer that is seen in fewer than 20,000 children per year.

“It put everyone in utter shock,” Calvin says. “We just didn’t see this coming. My wife has sickle cell, and I mentally prepared myself for that. But for Calliah, with any parent, that’s the last thing you want.”

Calliah immediately was admitted to Palm Beach Children’s Hospital, where she spent the next 42 days undergoing treatment. Her chemotherapy treatments led to fevers and vomiting. She had other serious complications, including high blood pressure, and she needed a temporary feeding tube.

The experience was a difficult one for her parents, who alternated nights with Calliah at the hospital. It was also difficult for Carissa, who didn’t understand why her sister and her mom weren’t home for their usual family dinners.

“She calls the hospital her sister’s house,” Calvin says.

Calliah tickles her dad Calvin while she receives chemotherapy.
Calliah tickles her dad Calvin while she receives chemotherapy.

Calliah was released from the hospital Aug. 27, but faces many months of treatment.

Already, Calvin and Ruth have taken their daughter to Miami for stem-cell collection, and to Atlanta for a specialized three-week treatment to fight the cancer.

Surgery on Calliah’s tumor awaits, as does a stem-cell transplant in Miami followed by four weeks of daily radiation — also in Miami — and then six months of immunotherapy. All told, Calliah requires another 16 to 20 months of treatment.

Calvin and Ruth remain optimistic about their daughter’s future, but they are struggling to make ends meet as Calliah continues her treatment. Both have had to take significant time off from work to be with Calliah, and they worry about income. They are facing mounting travel expenses, and they do not have reliable transportation as Calvin’s car needs repairs and Ruth’s car has mold.

Still, they are grateful — not only for the support of their loved ones and church but also for the strength exhibited by their little girl.

“She knows there’s something inside of her that’s making her sick, and it’s going to take time to take it out,” says Calvin. “We’re going to get it out.”

CALLIAH’S WISH

Calliah Pierre, a spirited 4-year-old who loves pink, purple and Doc McStuffins, was diagnosed with a rare cancer in July. She’s already endured four chemotherapy treatments and will need to undergo surgery, a stem-cell transplant and other therapies during the next 16 to 20 months. Her parents have been unable to work regularly during her treatments, and they are struggling to keep up with the many expenses they have accumulated. The family could use help in repairing their cars so they have reliable transportation to get Calliah to her medical appointments and hospitalizations. They also need help to pay for basic needs like the mortgage, groceries, clothing, shoes and learning materials for Calliah and her 2-year-old sister.

Nominated by: Pediatric Oncology Support Team Inc., 561-882-6336

 

Cancer-stricken teen: ‘I was born into a family of sick but really strong people’

Niva Louissaint, 17, rests before seeing her oncologist. Niva lost her leg to an aggressive form of cancer, which has metastasized to her lungs. She vows her cancer will not slow her down, though.

Photography by Greg Lovett

Nominated by Connor Moran Children's Cancer Foundation

Niva Louissaint, the 18-year-old not-girlie-girl doing lunges in her “Nap Queen” T-shirt, is trying to rebuild her balance now that her left leg is gone and a 10-pound metal and plastic prosthetic has taken its place.

She lost her leg more than a year ago, but she’s getting around to the rehab therapy only now because the year has been packed with so many other disasters. Niva lists them with little more than a shrug:

Six months of chemo on both lungs. (The cancer they found on her left shin moved north.)

Surgery on both lungs.

Two months of recovery only to have a CAT scan reveal that some tumors remained.

Radiation.

When not battling the metastasized cancer, her body is also grappling with sickle cell anemia, a blood disorder that damages her red blood cells and cripples their ability to carry oxygen.

As a therapist puts her through the paces, it’s not clear which is tanking Niva’s energy most: that cumbersome prosthetic, her compromised lungs or her handicapped blood cells. But the teen marches on, Adele’s “Someone Like You” piping through her lifeline — the earbuds to her cracked cellphone.

Less than 24 hours later, she would be knocked even lower: a scan reveals what appears to be more cancer growing in one lung. More surgery is ahead.

“I did not get the good news I was hoping for,” Niva concedes. And more immediately, her doctor is concerned about something else in her lungs — a possible blood clot.

That a teenager with such determination is suffering so much at the hands of her own body is infuriating to all who know Niva. But the assaults don’t end there.

Niva Louissant does strengthening exercises at CORA Physical and Occupational Therapy in Boynton Beach.
Niva Louissant does strengthening exercises at CORA Physical and Occupational Therapy in Boynton Beach.

As Niva puts it, “I was born into a family of sick but really strong people.”

Everyone in her home has sickle cell, and its wrath has been sweeping.

Niva’s mom’s kidneys are failing. Fifty-one-year-old Kesna Louissaint needs dialysis three days a week and a transplant in the long run.

Niva’s brother, Stanley, had a stroke when he was 8 after which his body threw the brakes on growing. He’s now 15 but with the stature of a boy closer to 10. He requires monthly blood transfusions for the sickle cell and does his studies from home to avoid the bullying his diminutive size attracted at school.

In June 2017, on the day that Niva had her leg removed from the knee down at Miami Children’s Hospital, her mom and Stanley were in St. Mary’s Medical Center in West Palm Beach. Mom’s kidneys were in a downward spiral. Stanley was battling a fever and infection.

Niva’s dad, Louicene Louissaint, 51, and her older brother, Kerlens, 22, spent that week shuttling from one hospital to the other and caring for the family’s youngest, 5-year-old Bradley.

The family, parents with roots in Haiti but a home west of Boynton Beach, don’t discuss Niva’s prognosis easily, but the cancer she has is unusually rare and aggressive. It is found in the lining of the nerves that extend from the spinal cord into the body. And when it spreads to other organs, it is a cancer that few survive — of those whose cancer metastasized, only about 8 percent are alive 10 years later.

Niva is focused on the here and now.

Despite being a full-time Santaluces High student with four afternoons a week dedicated to physical therapy and many days spent in doctors’ offices, Niva would like to pursue photography. The first step may be as simple as a phone without cracks. Her passion ignited when she and her visiting half-sisters challenged the brothers to a photo shootout — Niva won.

“You have to find the right moment and composition,” she says with authority.

Niva wants to go to prom and is eager for graduation, though concerned about the price of the cap and gown. Her other hobbies: watching anime with her brothers and collecting sneakers.

High tops. Low-riders. Bright reds. Blacks. Nike. Vans. She loves them all. Well, all but Converse — too hard to slip on. (And to be honest, this hobby has gotten trickier with the prosthetic leg and foot. Wrangling the shoe onto the prosthetic is a time-consuming affair that she does the night before.)

She’s managing worries few girls her age face: Will my jeans fit over this prosthetic? How soon can I get home and take this thing off? Where do I store my walker in a room that barely fits my bed and a dresser?

Still, Niva is pure teen in other respects. Her illnesses sidelined her before she could take a driver’s ed class and get her license. Now, Niva’s ready to get behind the wheel.

These days Niva is wearing her convictions. Where her left leg once held her up, her prosthetic is adorned with a yellow ribbon sticker with the words Isaiah 41:10 printed on it. The Scripture is internalized: “Do not fear, for I am with you; do not be afraid, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”

And when she needs a boost of courage, she turns to her father, who presses through his own ailments to support his family. Louicene Louissaint works as a 10-hour day as a garbage collector in Lake Worth, before becoming the family chauffeur in the afternoons, ferrying wife and children to their never-ending appointments. One November week, the stops included a CAT scan for Niva, an MRI for Stanley and dialysis for his wife.

These days, he’s had to borrow a car. His Nissan Pathway has no transmission, no air conditioning and tape for a rear window. It sits out of commission in the driveway.

Despite his tireless efforts, Louissaint’s salary and the disability checks for his wife are not keeping pace with their mounting bills.

A girl whose birthday falls on Thanksgiving Day every so many years, Niva wants to see her family lifted this holiday season as they have lifted her — particularly her dad.

“He has encouraged me to not only stand again but to stand up for what I believe in,” she says. “To work hard for what I want, and to help others — he goes out of his way for all of us, every day.”

NIVA’S WISH

Niva Louissaint lost her leg more than a year ago due to an unusually rare and aggressive cancer that’s found in the lining of nerves. The cancer discovered on her shin has spread into her lungs. The Santaluces High student spends her time between school, therapy appointments and medical treatments — all with the help of her parents, who battle serious ailments of their own. The family needs a reliable car, assistance with household bills, a big-boy bed for Niva’s 5-year-old brother and a laptop for the children. Niva, a photography buff, would benefit from a new cellphone.

Nominated by: Connor Moran Children’s Cancer Foundation, 561-741-1144

To make a monetary donation, click the Donate button. Please do not mail cash or merchandise.  If you have merchandise to donate, please contact the agency directly.

Disabled animal lover seeks safe, stable home and job

Bobby Hart holds Henry, a guinea pig that he helps care for at Arc of Palm Beach County.

Photography by Greg Lovett

Nominated by The Arc of Palm Beach County

If a kind heart and a friendly disposition could guarantee a comfortable life, we wouldn’t be talking about Bobby Hart.

The 25-year-old was born with developmental delays, a result of meningitis and encephalitis and high fevers just after birth. His young mother had arranged a private adoption, but when it fell through, Bobby was alone. He survived the infections, but he needed more than medical care. He needed a 24/7 mother.

Christi Hart stepped up. No one knew how much damage the infections had done to Bobby’s tiny brain, but Christi forged ahead.

“I became a parent to a 3-month-old infant overnight. On Labor Day with no labor,” she says jokingly.

Now an adult, Bobby has surprised everyone with what he’s accomplished, but he will never be able to live on his own without guidance and supervision. That doesn’t mean he’s not eager to contribute to society — he loves to work.

“I used to volunteer at Busch Wildlife. I would cut up the food for the turtles,” says Bobby of his time at the Jupiter sanctuary.

As Christi was preparing her son for his next step toward independence — a group home where he could spread his wings a bit more — fate forced the mother’s hand. She lost her job and the health problems she was battling got worse with stress. Then her 34-year marriage imploded and she and Bobby had to flee. They found temporary shelter with a relative, but the situation accelerated Christi’s plan to get Bobby out on his own.

Now Bobby is living in a group home in western Lake Worth. It’s a challenge, not having his mom there to help him for the first time, but they keep in touch by phone. He has chores, he’s learning and gaining some independence. He is blind in one eye and sees poorly out of the other. And while he can do simple things like operate the microwave — the stove is off-limits — his meals are prepared for him and he gets help with his medication.

What Bobby really wants is a job. The ARC provides daily transportation, temporarily, so he can attend its programs, a critical source of enrichment for Bobby. He joined The ARC’s mobile work team, which pays him minimum wage while he gets job training for a few hours a week as long as he can get there. He’s grateful for the work, stuffing envelopes, but those who know him agree Bobby has more to offer.

He loves to travel and study maps. He has a passion for animals. He had to surrender his dog when he and his mother were homeless, so his best friend now is Henry, the ARC’s guinea pig. The little animal chirps with happiness whenever Bobby picks him up.

“I take care of Henry,” he says. “I give him fresh water and clean his cage.”

In a perfect world, Christi says, Bobby would have a job at a zoo or sanctuary. As for Bobby, he just loves to work.

“I don’t like to sit around,” he says.

BOBBY’S WISH

Bobby Hart, a friendly 25-year-old man with developmental delays since birth, is transitioning to living on his own in a group home. He needs stability and long-term placement in a facility where he can be supervised. He attends a job training program, but needs a way to get there. He also needs dental work to close some gaps in his teeth, which cause him to drool. He is blind in one eye and sees poorly out of the other. It’s possible eye surgery would improve the vision in the eye he has left. Bobby’s clothing and possessions were left behind when he and his mother lost their home. He needs clothes — he says he loves camouflage because “it makes me think of going camping” — walking shoes and gift cards for personal grooming supplies.

Nominated by: The ARC of Palm Beach County, 561-842-3213 (ext. 105)

To make a monetary donation, click the Donate button. Please do not mail cash or merchandise.  If you have merchandise to donate, please contact the agency directly.

Dancing in spirit, teenage amputee grapples with physical hardships

Chrisma Joseph's love of dance was cut short when a large cancerous tumor was found beneath her knee. The stage 3 osteosarcoma spread throughout her leg and doctors had to amputate it.

Photography by Greg Lovett

Nominated by Families First of Palm Beach County

Chrisma Joseph laughs often. And it’s a miraculous act given what, at 17, she’s already lost: her ability to stay with her family in Haiti. Her native language. Her friends at home. Her leg.

The girl who loved to dance as a child now sits with her ever-present walker in her sister’s small, homey Delray Beach living room. But her physical challenges have yet to sink her spirit.

“She laughs at everything,” says friend and caseworker Dr. Vardine Simeus. “We just laugh, laugh, laugh.”

The story of Chrisma’s journey to Delray two years ago is really a love story about sisters that began when the teen was diagnosed with stage 3 osteosarcoma, with a tumor under her knee so large she could barely walk. It’s about how doctors in Haiti told Chrisma’s parents that “they couldn’t do anything” and that they should be “prepared for death.” It’s about how her sister, Rosema, a married mother raising two sons and going to school, refused to accept that.

“I talked to my husband and said, ‘Can we do something?’” says Rosema, who pursued a medical visa for her sister, so she could come to South Florida for the chemotherapy that saved her life but, sadly, not her leg.

Chrisma Joseph, 17, works on homework. She is a student at Atlantic High School.
Chrisma Joseph, 17, works on homework. She is a student at Atlantic High School.

So Rosema’s family of four has grown to five in this small apartment where Chrisma shares a room with her young nephews. Family takes care of family, but even so, the added costs of Chrisma’s care — some paid out-of-pocket — is straining. Atlantic High School, where she’s a junior as well as a part of Junior ROTC, is nearby. But as she must use a walker, it’s a difficult journey to the school bus.

Chrisma has the same problems sometimes getting to medical appointments and physical therapy. Still, she smiles. Dr. Simeus says that she’s seen the teenager, who wants to be a doctor, emerge from her shyness. Chrisma has even regained her passion for dancing through the story of amputee para-athlete Amy Purdy, who competed on “Dancing With The Stars.” Life is not yet like she wants it, and she’s still learning the language and the culture.

“What I want people to know is how my dreams are coming to pass,” she says. “I always smile when sadness comes. I have to stay strong and positive. I’m still here.”

CHRISMA’S WISH

Chrisma Joseph, a teen who once loved to dance, lost a leg after a cancerous tumor was discovered two years ago. The 17-year-old girl must rely on a walker to get to and from the school bus each day. This makes it difficult for her to not only to get to school but to her doctor’s appointments. Chrisma would benefit greatly from a three-wheel mobility scooter. She is also hoping for an accessible bed and a prosthetic leg, plus all the resources and therapies necessary for her to utilize it. The spirited, undaunted high school junior could use new clothing as well.

Nominated by: Families First of Palm Beach County, 561-721-2887

To make a monetary donation, click the Donate button. Please do not mail cash or merchandise.  If you have merchandise to donate, please contact the agency directly.

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

Lidia Silva lifts her daughter Amanda Silva, 11, into the family car to take her to school. They could use a wheelchair-accessible vehicle.

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

To make a monetary donation, click the Donate button. Please do not mail cash or merchandise.  If you have merchandise to donate, please contact the agency directly.

A farmworker’s heartache: caring for a disabled wife and their infant son

Asmay Desir Lucel plays with his son Smaylins in their backyard in Belle Glade.

Photography by Greg Lovett

Nominated by Farmworker Coordinating Council of Palm Beach County

The baby kicks his legs in delight at the sight of his father coming home from work. Asmay Desir Lucel, exhausted from a day of working in the Belle Glade sugar cane fields, picks up the 8-month-old boy and cradles him.

Asmay’s wife, Wislene Jean-Pierre, limps on the edge of the front porch and struggles to move her right arm and hand. Asmay reads her frustration: She’s a mother who can’t hold her own son.

Wislene, 34, suffered a stroke just a couple of hours after giving birth to their baby, Smaylins. She was in a coma for two weeks and awoke to stroke paralysis and brain damage. She struggles to move, properly communicate and even nurture her son. Some days, Asmay sees all hope slipping away.

At 41, he is the family’s sole wage-earner, now at a more limited capacity. He has had to cancel his usual off-season field work in Georgia so he can care for his wife and son.

The extra burden extends far beyond cleaning, cooking and changing diapers. It extends beyond Belle Glade. Asmay helps support two other children, his mother and two sisters in Gonaïves, Haiti.

“I try to send whatever I can. I’m responsible for them, too,” says Asmay. “We’re fighting poverty here and in Haiti. We’re fighting to survive.”

In Belle Glade, where his family’s small home sits in front of a dilapidated playground that’s missing swings, Asmay survives on a shoestring. He says the “$90 a week” cost for his wife’s therapy is not affordable, and it’s not easy to find reliable care for the baby.

“I have some neighbors who, from time to time, help with my son,” says Asmay, who leans back on the couch as the baby clutches his arm.

He glances across the low-lit living room and smiles at his wife.

“Before, she couldn’t walk or talk, but she’s improving.”

Amid his family’s hardships, he has dreams of financial stability. But he needs a year-round job and a vehicle (he borrows a friend’s car), not to mention the resources to help his wife through her rehabilitation.

One thing he doesn’t need: any more sudden surprises.

“I’m praying to God that I also don’t get sick — I pray God gives me strength to stay healthy,” he says. “I have to stay strong and courageous for my family.”

ASMAY’S WISH

At 41, Asmay Desir Lucel toils in the sugar cane fields of Belle Glade to support his family. But providing for them has proven to be daunting since his wife suffered a devastating stroke shortly after childbirth, leaving her partially paralyzed and unable to hold their now-8-month-old son. Therapy treatments for her have proven costly for Asmay, who had to give up off-season field work in Georgia to care for his family. He needs a year-round job and a car (he borrows a friend’s), and he needs the resources to help his wife through her rehabilitation.

Nominated by: Farmworker Coordinating Council of Palm Beach County, 561-533-7227

To make a monetary donation, click the Donate button. Please do not mail cash or merchandise.  If you have merchandise to donate, please contact the agency directly.