Carmen Anastasio

Lanzarote, Spain

In June 2022, Carmen, then aged 12, had her first seizure. Like her two older siblings, Tracy and Christian, she was diagnosed with Lafora Disease. Here’s what her mom Giovanna shared:

“And then there’s the little girl of the house, Carmen, 12 years old then, 13 today. I say “little” just because, in reality she is a gorgeous girl of five feet and seven who dreams of being a model, but also a surgeon, she’s super sporty, with very good grades and two big green eyes that charm you in an instant. 

In June 2022, Carmen was taking a shower, and we heard a loud chaos and then repetitive noises. I already understood what was happening and I rushed into the bathroom. No, no, no. It could not be, she was convulsing. We called an ambulance; they immediately admitted her to perform specific tests and once again the diagnosis was clear and dramatic: Lafora. We died for the third time. I never expected this for her, too, she was doing very well in school and she had no symptoms that made you think she was sick like her siblings…

To date, Carmen has had about one convulsion per month, small muscle spasms and she takes 8 tablets a day. They both have problems reading (visual crisis). Linked to this symptom there’s also short-term memory loss, that is, they read a word, and they forget the previous one they just read. This symptom slowly affects their daily life. Lafora children need motor, pedagogical, and emotional therapies, etc. They need home assistance. They’d need to interact with other people who are not family. “

The family has a GoFundMe to support their medical experiences and give Carmen a good life.

Translated by Camilla Bozzi.