You Will Have It
They found out they have Huntington’s because their older brother Giuliano also suffered from it. He died when he was 15 years old. Serena started to suffer from complaints at the age of 5 and it started with Damiano at the age of 8. That is special, because normally the disease only manifests itself when someone is 35 years old.
Jurre goes karting with the brother and sister. Their mother, stepfather and half-sister are also with them. “How are these kinds of outings for you as a family to do?” Jurre wonders. “Chaotic, but fun. It is one thing to realize all that”, says mother Claudia. “His muscles are no longer cooperating, so he doesn’t do anything himself anymore and we have to do everything for him,” she explains. “We enjoy these days together. Memories make”, adds stepfather Steve.
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Huntington’s disease
Sister Phaedra is the only one of the children who does not have Huntington’s disease. “I have a different father than her,” she explains to the presenter. “She was born of us.” Claudia points to Steve. “He is not a gene carrier, my ex-husband was a gene carrier of the disease. So in my previous family, all the kids had it.”
Because eldest son Giuliano was also ill, the family knows how the illness can progress. “He lived with it for 11 years. The children also have 10 years.” Damiano admits that he finds it scary to think about the disease process that awaits him, as he has seen with his brother. “I think about that sometimes,” he says.
