Zaina headshot

Zaina Zaid Nemer

/in , /by
Zaina smiling in a wheelchair with bags in the background

Zaina October 2023

Gaza

Zaina, now 17, was diagnosed with the ultra-rare epilepsy at the age of 13. A stellar student, Zaina applied herself to physical, occupational, and speech therapy just as she had in school. She relied on medication to manage her seizures, and Zaina even returned to school to take some exams.

Currently, Zaina is surrounded by violence and destruction in Gaza. The hospital where she received treatment is no longer operable. From Gaza City, her family has evacuated their home and moved across the Gaza Strip several times to escape the fighting. She’s lost the ability to speak and move because of the rapid progression of her Lafora symptoms.

Zaina sat facing away from the camera with bags in the background

Zaina October 2023

“There is nothing in pharmacies…There is no clean place here. We eat with the lids of cans, and I am careful when using them so as not to harm her. Everything is bad… Anyone who can help us and follow Zaina’s topic, please,” shared Doaa.

Help Lafora Patient Zaina and Family Evacuate Gaza

Zaina’s uncle started a GoFundMe in January 2024 to help her and the rest of his family through the Rafah crossing.

Tracy headshot

Tracy Anastasio

/in , /by

Tracy selfie

Lanzarote, Spain

In March 2022, Tracy, then aged 13, had her first symptom: myoclonus. Like her older brother, Christian, she was diagnosed with Lafora Disease. Here’s what her mom Giovanna shared:

Christian in a hospital bed holding hands with Tracy, Carmen stands next to her.

Christian, Tracy, and Carmen in 2021

“We were almost able to mourn Christian’s death until March 2022 arrived. Damned March 2022. Tracy, 13 years old then, now 14, our second child, a girl with a heart of gold, always ready to help others, cheery, and in love with life and her friends. My husband and I, we call her “hurricane”. We were preparing breakfast together and suddenly her arms raised to the sky without control. She looked at me, crying and told me: “Mom, I don’t want to die, too.”

We waited a few days, because we didn’t want to believe we were about to relieve it all again. But a few days later, we got a from her basketball coach saying that during training…Tracy had had her first convulsion. I couldn’t breathe, it was impossible, not again, no. We were shocked and that’s to say the least. I can’t explain it. We knew that there could be a possibility that our other children could also be affected, but such a disgrace seemed absurd to us. If it had already been devastating losing a child in the circumstances in which we lost Christian, having to face it once again with Tracy, without even having had time to recover from the first loss was something hardly humanly bearable.

Unfortunately, after being tested, the diagnosis was once again terrifying…Lafora disease, again…

Tracy is currently getting worse every day. She has more and more convulsions, muscle spasms, she is very slow in everything (this also due to the drugs which are real “bombs” for her organism), she can never be left alone, she constantly needs our help, she cries a lot and above all she is battling with depression. She takes 14 pills a day and we’re only at the beginning. The day will come when no drug works anymore, because Lafora patients become drug resistant.”

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

Translated by Camilla Bozzi.

 

Carmen headshot

Carmen Anastasio

/in , /by
Carmen at the gym

Carmen January 2023

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…

Carmen, Tracy, Christian - Giovanna's children

Carmen, Tracy, and Christian

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.

 

Mia Vivian Clement

/0 Comments/in , /by

Maine, USA

Mia Clement was a healthy student-athlete before her first seizure at age 12. After her second seizure, her family took her to a neurologist, driving four hours to access her care. Then, after multiple tests and lots of waiting, Mia was diagnosed with epilepsy and given Keppra to manage it. She was told there was a 50/50 chance that she would grow out of her seizures after she became an adult.

However, Mia’s seizures became closer and more violent. The doctor upped her Keppra but Mia started having memory and mobility difficulties, falling on the basketball court and forgetting where her classes were in school. Her family got a second doctor closer to their home in December 2019. Finally, after a genetic test and sleep study, Mia was diagnosed with Lafora disease.

“We got the results in March of 2020, right when Covid-19 hit, that she was terminal,” says her mother, Felicia Moore.

It was a shock to us all. How can this be? How long does she have?

Now, three years later, Mia’s Lafora symptoms have progressed rapidly. Sometimes she has energy and is in good spirits; some days, there is nothing but flickers and dementia. She has days where she seizes hard and stops breathing. Mia has hit her head so many times and suffered two broken noses, staples in her head from cuts, and countless scrapes and bruises.

This disease has taken away everything from her.

Mia struggles to feed or care for herself because of Lafora symptoms. Her well-being has changed drastically. Felicia cares for her full-time, with help from her sisters, while her father works a full-time job. Mia will be turning 20 in June 2023. She is a warrior!

Thank you to Felicia Moore for sharing Mia’s story and her experiences caring for her.