Giulia's parents go for a ride with her and her twin sister, who is not affected by Giulia's pathology. Giulia's father also suffers from a rare disease that causes loss of sight

A doctor plays with Giulia. Giulia is 3 and a half years old and was taken to the pediatric hospital for epileptic seizures for the first time when she was 3 and a half months old. However, the exact diagnosis of her illness came when she was 9 months old.

A tree behind Samuele's parents' house

Nicole's grandmother caresses her granddaughter. The load of tension and suffering can sometimes be the driving force for greater closeness and mutual support but in other cases cause conflicts and fractures, such as between Nicole's mother and father.

Roberto embraces his son Samuele

Samantha, Nicole's mother, helps her daughter put some jam on the toast. The autonomy of children affected by this pathology is very limited, in most cases children must totally depend on the support of their family.

Ines and Roberto help their son Samuele go to bed. Samuele's condition is very serious and it happens that there are periods in which he is affected by continuous epileptic seizures which in the most serious cases make even the administration of food difficult.

One of the concerns of parents with children suffering from rare diseases is that their children will be welcomed by the environment around them. At school level it is good to receive the right support and concentrate activities not so much from a purely "knowledge of specific subjects" point of view, but more from the point of view of daily life skills and autonomy.

A piece of wood in the middle of the sea near Nicole's dad's house.

Ines prepares Samuele for a bath.

Giulia looks out the window. In order to be able to dedicate as many hours of care as possible and to better organize their days, Giulia's parents had to include a professional figure and various babysitters in their family because they couldn't leave their jobs.

A doctor makes Giulia do an exercise with a ball. Giulia can neither speak nor remain standing without support. STXBP1 is a disease that can manifest itself in many different ways, in fact people with this genetic mutation have very different characteristics from each other.

After taking a bath, Nicole is helped to dry off and get ready for sleep.

Nicole plays together with her brother Eros and her sister Gioia. Sometimes, siblings may feel alone and abandoned by parents who are too often busy with sick children, or jealous of the attention paid to their sibling, which is why parents must necessarily also involve their siblings in the phases of their sick sibling's life, giving them a role active in taking care of their sick brother so that they can feel useful and not excluded, part of a united family, just like Nicole's.

Roberto carries Samuele on his shoulders to accompany him to sleep. Due to the criticality of his condition, Samuele has to rely completely on his family. One of the parents' worries is to think about how it will become more complicated to be able to help Samuele even on a physical level, once he gets bigger and bigger and they get older.

Nicole watches her brother and sister from afar as they do homework with their mother Samantha and her husband Marco.

Ines hugs her son Samuele.