This is the eighth in a ten-part series by Express journalist Khamarie Rodriguez, exploring the triumphs and tragedies of those living with or caring for people with special needs in Trinidad and Tobago.
ONE late June evening in 2017, Ornella Phillip was murdered at her home in Gasparillo.
Not far away, her disabled nine-year-old daughter, Kayla, was asleep in the arms of her grandmother, blissfully unaware the woman she had grown up with was no longer alive.
At two weeks old, Kayla began trembling uncontrollably.
Unsure of how to help her daughter, Ornella took her to a local hospital, where she was placed on a ward and given antibiotics.
Kayla fell silent and stopped moving and, with passing time, it became apparent the drug she was given to soothe her shaking was much too strong.
She lay motionless and in a state of shock.
In the days that followed, while Kayla recuperated, she was diagnosed with cerebral palsy after failing to meet normal developmental milestones.
Her aunt, Nikita Phillip, told the Sunday Express how difficult it was to receive this diagnosis.
“We were all devastated but we dealt with what came along, day by day. It was hard but we pushed through. Her mother really pushed through the adversity.”
Unable to walk, move or interact normally, Kayla depended on her mother’s love to get her through day-to-day functions.
Ornella, in turn, dedicated her life to ensuring her daughter was happy.
Kayla and her mother were inseparable.
Each day was filled with activities planned weeks in advance, not a moment wasted between them. Most were spent in the classrooms of the Lady Hochoy School in Gasparillo. Others were spent moving from place to place, attending events or therapy sessions across the country.
“She was involved in everything. She treated her as if she were a normal child. She would go to school in the morning and then she would accompany her mom who did small odd jobs in the evenings.
“Kayla loves concerts. She likes the music and the people, so they were always going to some kind of concert. She was very involved with the Christian radio stations, so whatever events they held, you could always find them at the forefront,” said Nikita Phillip.
This would change on that night, when at 27 weeks’ pregnant, Ornella Phillip was shot and killed inside her house.
At 7 o’clock the next morning, her body was found by a neighbour.
“My niece believes it was her fault. She had asked her mom to spend the night with her grandma, and so she thinks that if she was there the person would not have killed her mother,” said Nikita Phillip.
“I was the one who told her (about her mother’s death). My fiance had passed away some years before, so I had to explain death to her before. So after this happened, I sat her down and I told her that mummy and the baby went to be with her uncle in heaven.
“She cried and cried, but she’s so intelligent and compassionate that when I started to cry too, she stopped to comfort me.”
Now, almost three years later, Kayla and her family are still coping with the absence of her mother, each day a reminder things are no longer the same.
Now living with her grandmother on weekdays and her aunt on weekends, the responsibility between them is difficult, but shared.
An ageing woman, Kayla’s grandmother tries to fill the shoes of her mother, but finds it difficult to lift her 93-pound granddaughter from place to place.
Kayla is unable to use the washroom without assistance, instead using diapers.
Once able to move in a small capacity, since her mother’s death, she has returned to the use of a wheelchair, often making it challenging to transport her.
Nikita Phillip says the biggest challenge is her expenses.
“Because Kayla uses (diapers), it’s probably one of the more expensive grocery items that we have. Other than that, there is therapy.
“Her mom used to take her to a lot of different therapy sessions, but now because of time and money we only take her to water therapy. That costs about $3,600 per session.
“It has been a pull and tug financially, especially in these times. It’s sometimes even more complicated to access the grants.
“The social workers make it very hard to actually get through. They give you lists of documents you need at different points because there isn’t a standardised list in place. And when you do speak to them, it is as if you are taking money from their pockets.
“I understand that some people abuse the system, but most of us are trying to survive and it is already dehumanising to ask people for money. Why do they make it so difficult?”
The family believes the best future Kayla can have is one that is not in Trinidad and Tobago. Currently on a drive to relocate to Indiana, USA, they have found a community that caters to those with disabilities such as hers, one they say is not currently available in Trinidad and Tobago.
“It’s hard for all caregivers of children like these. It is a 24/7, 365-day job that you do not get paid for. In Trinidad we have looked into things like daycare facilities, but there are none. The capital is currently being transformed to cater to the differently abled. However, in South, especially in San Fernando, there are barely any things in place.
“If I have to take Kayla somewhere that has more than one storey, we have to find parking or someone has to stay in the car with her. This is very taxing. We are humans and we need to be able to take care of ourselves, but in this country there are just no provisions to help us,” said Nikita Phillip.
Right now, Kayla is happy and is well supported by her family.
The things she asks for more than anything is to spend time with her family, to whom she has grown closer since her mother’s death.
She still attends the Lady Hochoy School in Gasparillo, and is described as a normal and intelligent child who loves and misses her mother.