Fundraiser for girl with rare epilepsy

The parents of a little girl from Cork who was recently diagnosed with a rare epilepsy syndrome are asking the public for help to get her the treatment she needs.

Maisie-Lou, 7, from Cloyne is described by her mum Danielle as a bright, funny, and creative little girl who loves animals, adores her little brother, and is happiest when she is drawing or making things.

In January 2025, Maisie-Lou was diagnosed with epilepsy and began taking anti-seizure medication. Around the same time, her school raised concerns about her speech and language.

Following a sleep-deprived electroencephalogram (EEG) at CUH, doctors identified abnormal brain activity and Maisie-Lou was diagnosed with suspected Landau-Kleffner syndrome. To their horror, her parents learned that the anti-seizure medication she had been taking may have negatively impacted her condition.

Landau Kleffner Syndrome (LKS) previously known as acquired epileptic aphasia, is a rare childhood epilepsy syndrome where seizures are associated with loss of receptive and expressive language skills, as well as cognitive problems.

After sharing Maisie-Lou’s medical information with specialists abroad, her parents were introduced to Hospital Sant Joan de Déu in Barcelona where a multidisciplinary team will be able to investigate her condition and help guide the right treatment plan.

For this, Maisie-Lou may need to spend several weeks in Barcelona while she undergoes investigations, assessments, and treatment. However, her mum says the costs of travel, accommodation, and medical care are far beyond what the family can manage alone.

To help get Maisie-Lou get the crucial treatment she needs and to fully understand her condition, her family has set up a GoFundMe page, ‘Help Us Find Answers for Our Daughter’, which has raised over €13k of a total target of €40k.

“She has the kindest heart, and she brings so much joy to everyone who knows her. Yet, she's been quietly facing challenges that many people can't see,” Danielle shared on the page.

She continued: “We still don't have a diagnosis that fully explains everything. As parents, that's incredibly difficult.

“We aren't travelling to Barcelona expecting a miracle; we're travelling because we need answers.

“Asking for help is one of the hardest things we've ever had to do.

“If you're able to donate, no matter how small, you'll be helping us give our daughter the opportunity to receive the specialist care and answers she deserves,” added Danielle.

To donate, visit gofundme.com and search for ‘Help Us Find Answers for Our Daughter’.