Duleek Family Seeks Funding for Barcelona Epilepsy Assessment
A 13-year-old Duleek resident named Amelia is seeking funding to help cover a specialist medical assessment in Barcelona as she manages a rare form of epilepsy. Her parents, Rasa and Arunas Pocevicien, launched a GoFundMe campaign to cover initial hospital consultations, EEGs, CT scans, and genetic testing at a Spanish medical facility after struggling to secure specialized neurology referrals within Ireland.
The funding campaign aims to bring the teenager to Spain for diagnostic testing to reassess her treatment options. While her family acknowledges that Jeavons syndrome is a lifelong condition without a cure, they hope the specialist review will help identify adjustments to better control her seizures and improve her daily quality of life.
Diagnosis of Jeavons Syndrome and Progression of Seizures
Amelia was diagnosed with Jeavons syndrome at four and a half years old after her parents noticed brief eye-flickering episodes they initially mistook for tics. Until age eight, she primarily experienced these eyelid-fluttering seizures associated with the condition.
The clinical picture changed when she experienced her first tonic-clonic seizure at age eight. Now a first-year student at Ballymakenny College in Drogheda, she experiences both absence seizures and eyelid-fluttering episodes that affect her concentration, memory retention in class, and mobility around the school.
Treatment Challenges and Impact on Daily Life
Amelia has tried various anti-seizure medications and dosages over the years and currently takes two types of medication, according to her parents. Despite repeated contact with Irish neurology services, the primary medical response has been increasing her medication dosages without providing the specialized support her parents sought.
The unpredictable nature of the seizures has created constant safety concerns for her family, resulting in previous falls and injuries. The physical and emotional toll of the condition has also limited her participation in activities she enjoys, such as singing lessons and swimming.
Fundraising Campaign Details and Cost Breakdown
Both parents work full-time but do not possess the savings required to cover the out-of-pocket medical expenses abroad. The initial cost estimate for the consultation and diagnostic tests in Barcelona is approximately €7,000, which excludes flights, accommodation, and travel expenses.
Donations are currently being accepted through an online GoFundMe appeal established by the family to help cover the travel and diagnostic costs.
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