Toddler passes away after battling neurological disorder

Though she was only two years and six months old, Grace Williams put up a fierce battle against the crippling condition known as Dravet syndrome.

Unfortunately, her heart stopped beating last Tuesday. Her mother, Tracy Ann Ricketts-Williams, said the toddler passed away at the Phoenix Center for Rehabilitation and Pediatrics in New Jersey from heart failure. As Williams mourns the passing of her fourth child, she says she is grateful for all who supported her throughout the journey.

"I would like to thank the JTA [Jamaica Teachers' Association], The Jamaica Teachers' Association Cooperative Credit Union and all other entities and persons that made it possible for us to go overseas and for her to get treatment. Things did not work out the way we had hoped, but I am really grateful for all the support. Thank you so much," Williams said.

Dravet syndrome is an epilepsy syndrome that begins in infancy or early childhood and can include a spectrum of symptoms. Children with Dravet syndrome initially show focal or generalised convulsive seizures that start before 15 months of age, often before they are one year old. These initial seizures are often prolonged and involve one side of the body and may be followed by seizures that switch to the other side. Other seizure types emerge after 12 months and can be quite varied. Status epilepticus -- a state of continuous seizure requiring emergency medical care -- may occur frequently, particularly in the first five years of life.

Grace's condition was first highlighted in the May 9, 2022, publication of THE STAR bearing the headline 'Parents seek help for sick baby'. Grace was suffering from bleeding at the back of the brain and frequent seizures. The NYU Langone Health medical institution had offered treatment at an estimated cost of US$12,500 (approximately $1.9 million). Between then and early 2023, Grace underwent three different operations at the hospital. Following the surgeries, Williams said the infant was deemed medically fit and was transferred to the New Jersey institution.

"She wasn't walking or talking, but she was making progress. She was doing outpatient therapy. She had got a virus in her lungs plus she had done surgery on her intestine. She had breathing issues as well. A lot of this had to do with the frequent seizures that she was having. She had a swelling all over her body in March and her liver was enlarged. Her seizures had minimised, but last week Tuesday, something terrible went wrong. The doctors said her heart failed," she said.