Valeria was born in Salerno in 2013. A cheerful little girl, full of life, who today lives with a very rare genetic disease: Sanfilippo syndrome, a type 3B mucopolysaccharidosis, one of those that change your life and which, unfortunately, still have no cure. A diagnosis that came too late, almost seven years after birth, at the end of an exhausting journey of visits, hospitalizations, tests and many ignored doubts. The story is contained in the document provided by the family
It all starts from the first days: respiratory problems, a month in an incubator, pneumonia due to ingestion of amniotic fluid. Then the years of doubt: delay in language, difficulty removing the diaper, lack of curiosity. Marianna, the mother, feels it: something doesn’t add up. But doctors, for years, dismiss everything as “character”, “passing delay”, “spoiled child”.
The turning point came by chance, in 2020. A gastroenterologist replaced at the last moment, Dr. Salvati, recognized signs seen years earlier during her studies with Professor Giancarlo Parenti of TIGEM. He asks for new tests, recovers old samples, gets in touch with the doctors in Siena. On June 15th the diagnosis arrived: mucopolysaccharidosis type 3. Valeria is almost seven years old. “There is no cure,” Marianna reads on the internet. A stab.
Today Valeria is 11 years old. She is followed by Professor Parenti in Naples, at Federico II. The disease has run its course: motor difficulties, language problems, sleep disorders, loss of autonomy. She has to be fed, she wears diapers again, she has heart failure for which she will have to be operated on.
Marianna left her job to take care of her. The older brother, Vincenzo, grew up quickly: from a rebellious boy to an affectionate and mature point of reference. The house, once full of friends, is now quieter: many have moved away, frightened by an illness they don’t know about or from which they don’t know how to defend themselves. Isolation weighs heavily, but Marianna doesn’t stop fighting. He goes to schools, tells their story, raises awareness. Once a boy said to her: “Can I hug her?”. A gesture he never forgot.
“Valeria loves to laugh,” says Marianna—so much so that she tattoos that word on her skin. He loves music, cartoons, bedtime stories. She is a little girl who, despite everything, makes those who meet her feel the full value of life. And it is precisely with children like her in mind that the Telethon Foundation’s new Christmas campaign starts.
From left, the president of the Telethon Foundation, Luca di Montezemolo, the Rai CEO, Giampaolo Rossi, the general director of the Telethon Foundation, Ilaria Villa, and the Prime Time Rai Entertainment director, Williams Di Liberatore, during the presentation of the Telethon Foundation television marathon on the Rai networks
(HANDLE)
Telethon, the 2025 Marathon begins: a week to give research a future
The great solidarity mobilization is back again this year: from 13 to 21 December the 36th Telethon Marathon arrives on Rai networks, with special programming designed to support research into rare genetic diseases. The data and program of the marathon come from the official press release
The 2025 campaign is dedicated to the theme of rarity: that which fascinates and that which scares. Families like Valeria’s know well what it means to live with a disease that few know about and that very few study. Research is the only concrete way to transform fear into hope.
The Chocolate Hearts return to the streets — 20 and 21 December
In over 3,000 collection points throughout Italy, it will be possible to support Telethon by choosing the famous Chocolate Hearts:
red (dark) or green (milk) packaging,
with 15 chocolates wrapped in wrappers dedicated to affection, commitment and hope,
for a minimum donation of 15 euros.
They will be distributed by volunteers from Telethon, UILDM, AVIS, Anffas, UNPLI, Azione Cattolica, together with the newsstands participating in SI.NA.GI. The list of squares is available onfondatelethon.it.
The week on TV
13 December: the numerator turns on in prime time on Rai 1 during Dancing with the Stars with Milly Carlucci.
From 18 to 21 December, from the Dear “Fabrizio Frizzi” Studios, relay hosting with Timperi, Casalegno, Ciampoli, Belli, Perego, Rinaldi, Isoardi, Daniele, Setta, Fialdini and many guests.
21 December: closing with the L’Eredità special hosted by Marco Liorni, again on Rai 1.
Radio Rai, with a special involvement of Radio2, will accompany the campaign throughout the week.
How to donate
Solidarity number 45510 active from 1 to 31 December
2 euros with SMS from WINDTRE, TIM, Vodafone, iliad, PosteMobile, Fastweb, CoopVoce, Tiscali mobile phones
5 or 10 euros from TIM, Vodafone, WINDTRE, Fastweb, Tiscali, Geny Communications landlines
5 euros from TWT, Convergenze and PosteMobile
Donate by credit card on:
Fondazionetelethon.it
toll-free number 800 11 33 77 (from abroad +39 02 34989500)
Chocolate hearts also available on shop.fondazionetelethon.it
Why it is important to donate
Thanks to the Telethon Foundation, gene therapies now exist that until a few years ago seemed like science fiction—such as those for ADA-SCID and metachromatic leukodystrophy. New treatments are on the way, while researchers at the Telethon Institute of Genetics and Medicine (TIGEM) are also working on new molecules for Sanfilippo syndrome, the very one that affects Valeria.
Every donation is a step forward, another brick to build a cure that doesn’t yet exist.
It’s a way to tell families that they are not alone.
And to give children like Valeria the chance to continue doing what they love most: laughing.
