Duleek parents appeal for help to bring daughter abroad for epilepsy assessment

A Duleek family is appealing for public support to help their 13-year-old daughter travel to Barcelona for specialist medical assessment after years of living with a rare form of epilepsy.

Rasa Pocevicien and her husband Arunas are hoping to raise funds to bring their daughter Amelia to a specialist hospital in Spain, where they hope she can undergo further testing and have her medication and treatment options reassessed.

The family, originally from Lithuania, have lived in Ireland for the past 17 years and are raising four daughters, Alteja, Amelia, and twins Fausta and Rebeka, in Duleek.

Amelia was diagnosed with Jeavons syndrome, a rare form of epilepsy, when she was just four and a half years old.

Her parents first became concerned when they noticed that her eyes would flicker for a couple of seconds at a time. At the time, they did not realise these episodes were seizures and initially thought they might be a tic.

Following a visit to a neurologist, the family received the diagnosis. Until Amelia was eight, she mainly experienced the eyelid-fluttering seizures associated with the condition. However, she then had her first tonic-clonic seizure, changing the family's life.

Now a first-year student at Ballymakenny College in Drogheda, Amelia experiences absence seizures as well as eyelid-fluttering episodes. Her parents say these affect her ability to concentrate, retain information in class and move around the school safely.

Over the years, Amelia has tried a number of anti-seizure medications and different dosages, but her seizures have continued. She is currently taking two types of medication.

Her parents say that despite repeated contact with neurology services in Ireland, they have been unable to secure the referrals or specialist support they believe she needs, with the main response so far being an increase in her medication.

The seizures can happen without warning and have left her parents constantly concerned about her safety.

“I know she's a teenager. I know that I need to let her go out with friends, but I'm so terrified of that,” Rasa said.

She described the worry of not knowing when Amelia might have a seizure, particularly when she is away from home. The episodes have also resulted in falls and injuries.

The ongoing impact of the condition and its treatment has affected Amelia's emotional wellbeing as well as her physical health and her parents say they want to give her the best possible opportunity to enjoy her teenage years.

"Amelia loves singing and previously attended singing lessons and she also loves swimming," explains Rasa. However, the family say her health difficulties have affected her ability to continue with activities she once loved.

The family have contacted a specialist hospital in Barcelona after researching options for further assessment. Specialists have outlined a plan for further investigation, including an EEG, CT scan and genetic testing, to help establish more about Amelia's condition and inform decisions about possible treatment and medication options.

The initial estimate for the consultation and tests is approximately €7,000, excluding flights, accommodation and other travel expenses.

The family understand that Jeavons syndrome is a lifelong condition and are not expecting a cure. Instead, they hope the specialist assessment may help identify ways to get Amelia's seizures under better control and improve her quality of life.

“I'm not hoping for any cure,” Rasa said. “But at least get it under control.”

Both parents work full-time, but Rasa said they do not have the savings to meet the cost of the assessment themselves. Asking for help has not been easy, but the family feel they need to explore every available option for their daughter.

A GoFundMe appeal has been set up to help meet the costs, with the family asking people to donate or share the fundraiser.

In the appeal, Rasa wrote: “We are not asking for a perfect life. We are asking for the chance to help our daughter live one.”

She added that every contribution, no matter how small, would bring them closer to getting Amelia the specialist care they hope will improve her quality of life.

You can support the fundraiser here