Save 10 children with rare Lafora, including my daughter

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Pershendetje Une jam Fatos Malaj dhe po kerkoj ndihmen tuaj!

Vajza ime Emi vuan nga nje semundje shume e rradhe “semundja LAFORA” semundja Lafora eshte nje semundje degjenerative neurologjike terminale e karakterizuar epilepsi progresive e mioklonit konvulsione tonico klonike,renie kognitve,çmenduri ne femijet,ataksi dhe vite vuajtje...

Watch our story here: https://youtu.be/O4U8Qpo1KvU

My name is Fatos, and I’m asking for your help because my daughter, Emi, has been given a rare chance at life. We can’t do it without you.

When Emi was just 10 years old, she had her first seizure while on a school trip. She had always been a healthy child, so getting that phone call was terrifying. That moment changed everything.

After countless tests, we learned Emi has Lafora disease—a rare and fatal form of epilepsy that also causes childhood dementia. There is no cure. Learning her diagnosis felt like the future had been ripped away from us.

Emi had big dreams. She loved maths and reading and wanted to be a businesswoman. Watching her world shrink while she's suffered cognitive decline, myoclonus, and frequent hospitalizations has been heartbreaking.

But now, for the first time, we have hope.

Emi has been selected as one of just 10 children from around the world to participate in a groundbreaking FDA-approved safety study in Dallas. The treatment, called ION283, is an ASO therapy that aims to stop the progression of Lafora disease. It’s the first of its kind for Lafora, and it could change everything—not just for Emi, but for children like her across the world.

This study is entirely funded by families like mine, and we urgently need your help to make it happen.

Your donation will go directly toward:

Covering clinical trial costs of the study
Supporting our travel from the UK to the U.S.
Helping enroll other children

We are so close to fully funding the study, an incredible total of $1.5 million, but we need your support to finish. We are at six patients, and we need to enroll all 10!

Please consider donating to give Emi and other children with Lafora disease a chance at life.

From the bottom of my heart, thank you for reading, sharing, and supporting our journey.