Mother of a seriously ill child writes to Meloni: 'We are not invisible'

"Help us so that we 'rare but not invisible' mothers no longer have to fight against bureaucracy or indifference, but can devote ourselves only to what we do best: loving and watching together with our children the rainbow that comes during the storm". Launching the appeal in an open letter addressed to Prime Minister Giorgia Meloni, is Tiziana, the mother of Bernadette Marie, an 11-year-old girl born with a rare genetic disease. It is the mutation of the Gabrb3 gene, which causes her epileptic encephalopathy and severe psychomotor retardation. "We are mothers of children who will never bring home from school colourful drawings and recited poems, but who know how to give colour and light despite the darkness of their illness and suffering," reads the letter written for Mother's Day.

"But we are not heroines by choice, we are often overwhelmed by panic, fear, guilt and helplessness, as well as loneliness," writes Tiziana. "Our children have the right to live the best possible life, as long as they are allowed to," Tiziana writes again. "Often, when it comes to rare and incurable diseases, society tends to look the other way, almost as if the lack of a definitive cure makes that child's life less worthy of investment or dreams."

And it is in this regard that Tiziana appeals to Meloni: 'If we cannot add years to these children's lives, we have a moral and civil duty to add life to their years, offering them a full quality of life, rich in new meanings'. Paediatric palliative care, from this perspective, 'is not the end, but the beginning of protection. They do not serve to accompany death, but to sustain life where there seems to be none'. The request is therefore for paediatric palliative care networks to be strengthened in every region and 'that there be no disparities between North and South, and that every fragile child have their own paediatric hospice or specialised home care'. "Today, as I receive a smile from my daughter - a smile that is worth twice as much because I know how much it cost to fight for it - I ask you to be the guarantor of this beauty and this joy, however brief or laborious it may be".