Second-generation Barbadian Daniella Sawyers is enjoying a new lease on life at 17 and will soon be granted her wish – to visit Barbados.
She was diagnosed with Rett syndrome – a rare genetic neurological and developmental disorder that affects the way the brain develops, and causes a progressive loss of motor skills and language – at the age of two, when she began showing signs of unsteadiness and could not stand or walk for long periods of time.
In June, she began treatment at Cohen Children’s Medical Centre with a newly approved drug that dramatically reduced the symptoms of her illness.
Daniella was present at a press conference on Tuesday, at which her doctor, Sanjeev Kothare, MD, director in the Division of Pediatric Neurology at Cohen Children’s Medical Centre, presented his findings.
Also present, along with her Barbadian mother Chyrel, her Jamaican father Donovan and other members of the Northwell Health team, were Consul General of Barbados at New York Mackie Holder, and Deputy Director, Barbados Tourism Marketing Inc. (BTMI) USA, Tenisha Holder.
Rett syndrome occurs almost exclusively in girls and leads to severe impairments that affect nearly every aspect of the child’s life, pointed out Dr Kothare, who has been treating Daniella for the past few years. The disorder is caused by mutations on the X chromosome on a gene called
MECP2.
It is estimated that Rett syndrome occurs worldwide in one out of every 10 000 female births. Patients will live to middle age or beyond with increasingly debilitating symptoms if not treated.
By the time Dr Kothare started treating Daniella in 2021, she was experiencing chronic and uncontrollable seizures – as many as 30 to 40 in one day – and her ability to speak was very limited. Her mother said that Daniella “spoke with her eyes”.
That began to change when Dr Kothare prescribed a drug called Daybue (trofinetide), which was approved by the FDA in March. The new drug improved cognition, gait and behaviour.
We are so grateful to Dr Kothare for prescribing Daybue for Daniella,” said the teen’s mother. “In just three months, she is walking and speaking sentences. And the seizures are much less frequent and of shorter duration. The thing to remember is that children like Daniella understand everything – it’s like they’re trapped inside a piece of glass.
According to Dr Kothare, Daniella will be taking the medication for the rest of her life. He believes that she and her family will continue to see improvements.
The Barbados representatives were part of the event after a Northwell representative contacted Consul General Holder about Daniella’s condition and her wish to visit Barbados, the birthplace of not only her mother but of Rihanna, of whom she is a big fan.
When Holder heard, he sprang into action. The family and audience burst into applause when he announced that the Sawyers family would be treated to a one-week vacation in Barbados.
Daniella clearly understood the announcement. Looking at her mother, she said, “I love it.”
Holder said it was an honour to have Barbados associated with the announcement of the medical breakthrough by Northwell, which has been particularly kind to the island during the COVID-19 pandemic and with which he had built a strong relationship.
He noted that the Consulate could not help but get involved when he heard of Daniella’s story. He said making her dream trip come true was a reflection of the DNA of Barbados which has built a reputation for warmth and hospitality, whether sharing a meal with strangers or giving refuge to stranded persons and ships, as it did during the pandemic.
He also pointed out that Barbados was known as a place people visited for its recuperative climate.
Tenisha Holder said BTMI was happy to facilitate the family trip to Barbados and would ensure Daniella sees Rihanna’s childhood home and enjoys as much of what the island has to offer as possible.
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