EMI MALAJ AND NINE OTHER CHILDREN HAVE A CHANCE AT LIFE: Family Pleads for Help in the Fight Against Lafora Disease
Emi has been selected as one of only ten children in the world eligible to participate in a clinical trial in Dallas (USA), where an experimental treatment, ION283 – the first therapy ever developed for Lafora disease – is being tested. This is an ASO therapy aimed at stopping the progression of the disease. The study has been approved by the U.S. Food and Drug Administration (FDA), but despite its groundbreaking potential, it is entirely funded by the families of affected children. For Emi to travel to the U.S. and participate in the treatment, her family needs additional financial support
Emine “Emi” Malaj, a young girl of Albanian origin, is fighting the most important battle of her life. At just 10 years old, while on a school trip, Emi suffered her first seizure. The diagnosis that followed shocked her entire family – Lafora disease, a rare and fatal form of epilepsy that also causes dementia in children.
“She was a perfectly healthy child. The phone call we received that day changed our lives forever,” recalls Emi’s father, Fatos Malaj.
HOPE IN DALLAS
Lafora disease doesn’t just cause violent seizures – over time, it leads to severe cognitive decline. There is currently no cure, and families like Emi’s are often left to watch their loved ones slowly lose both their abilities and their memories.
But now, there is hope. Emi has been selected as one of only ten children in the world eligible to participate in a clinical trial in Dallas (USA), where an experimental treatment, ION283 – the first therapy ever developed for Lafora disease – is being tested.
This is an ASO therapy aimed at stopping the progression of the disease. The study has been approved by the U.S. Food and Drug Administration (FDA), but despite its groundbreaking potential, it is entirely funded by the families of affected children. For Emi to travel to the U.S. and participate in the treatment, her family needs additional financial support.
$1.5 MILLION NEEDED – JUST A LITTLE MORE TO GO
So far, approximately $1.2 million of the targeted $1.5 million has been raised. Currently, six children are enrolled in the program, and four more need to be included for the trial to be complete. Emi is one of them.
“We’re asking everyone with a kind heart to help. This is not just a chance for our Emi, but for all children battling Lafora disease around the world. This study could open the door to healing,” pleads father Fatos.
Anyone who wishes to help can donate through the official campaign, and the family is deeply grateful for every share and post across social media.
“From the bottom of our hearts, thank you to everyone who supports us. Our fight is far from over – but now, we have hope,” Fatos concludes.
