Tracy Anastasio

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:

“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.