The family of two-year-old Larissa, who was diagnosed with West syndrome at two months old and experiences up to 100 seizures daily, is appealing to the public for financial assistance to fund treatment in India.
The treatment is estimated to cost US$10,000, excluding travel, accommodation, food and other expenses while abroad, with the family estimating they will need several million Guyana dollars to cover the full cost. Larissa’s mother, Juliann Pereira, said the family has been trying to raise the funds for about a week and has so far managed to raise $1 million.
Pereira told Ignite News that Larissa was born healthy, but their lives changed when the baby began crying uncontrollably throughout the night. Concerned, she and her husband rushed their daughter to the Georgetown Public Hospital, where they received the diagnosis.
“They told us she had West syndrome… something that is a milestone delay, so she would never be able to do anything right now,” Pereira recalled.
Since then, Larissa has undergone medication and therapy, but after two years, Pereira said the family has not seen the progress they hoped for. The treatment has helped reduce the severity of her seizures, but she remains unable to move independently and requires constant care.
That responsibility has meant major changes for Pereira, who had to stop working to focus on caring for her daughter.
“It’s a little hard, but what are you going to do? It’s my baby, so I have to take care of her,” she said.
According to her mother, Larissa continues to experience between 90 and 100 seizures each day, with episodes that include rolling her eyes, raising her arms and legs, crying in pain, vomiting and refusing food.
“She gets pain sometimes. She lies on her back most of the time,” Pereira explained.
Seeking another option, the family consulted a doctor in India who recommended further medical evaluation, treatment, medication and physical therapy that could help improve Larissa’s condition. Before treatment begins, she will need additional assessments, including MRI and EEG tests, to determine the best course of care.
Pereira described Larissa’s condition as life-threatening and said doctors have explained that children with West syndrome can have different outcomes. For Larissa’s parents, the goal is to give their daughter a chance at a better quality of life.
“For Larissa, I just want everybody to help me give her a life so that she could be able to do something for herself,” Pereira said.
Donations can be made via MMG at 652-0167 or through Demerara Bank account number 00600132221.
