Francesco the “child of crystal and rock” with a rare yet unnamed disease: Let’s help him


Francesco is “the crystal and rock child” who will certainly have catalysed your gaze through the cover photo that accompanies this writing. For me talking about him is a little different than everyone else rare children that Vitadamamma has welcomed and tried to help over the years and I’ll explain why: I met Francesco during a project that I developed in a nursery school in my hometown, Portici (province of Naples).

This child wears his rarity on his skin with a dignity and courage very far from his barely 5 years old, he is aware, he is strong, he is wise and this is why it is not enough to define him as crystal, he is a rock, however fragile in body in the soul.

A little warrior who amazes and moves

Francis he amazes at every step, looking at him from the outside his gait is uncertain, yet he wants to dance; he amazes with each new conquest, his little hands are contracted by pain, yet he wants to write his story with ever new colors and he does it.

Francesco commuove, toccherà anche i vostri cuori! 

But above all, now he needs our help: the family must get to a hospital in Paris as soon as possiblethe Hospital Necker – Enfants Malades, where an internationally renowned Doctor could determine which rare disease afflicts him.

Francesco was followed up in Naples for a year and a half, from July of this year he was taken in charge in Rome following a sudden worsening, none of these structures, however, however excellent in Italy, was able to give a name to the rarity of Francesco.

Meanwhile, starting from the month of June, his mysterious condition blocked him in the buggy and caused deep ulcers on his arms and legs, preventing him from any social life, even access to that class and among those children who were his school, the his companions, his life.

Unfortunately in Italy they cannot understand what my son has”, says the mother. The doctors of the Bambin Gesù uploaded the case of Francis to a European clinical platform, there the encounter of hope: a Doctor from Paris responded to the appeal, hypothesizing a “infantile pansclerotic morphea” disease which cannot, however, be diagnosed in absentia. Many things coincide with Francesco’s condition, including his age at onset.

Photos are not enough: the Doctor wants to visit Francesco in the Paris hospital, the only place in Europe where today this child could find an answer and therefore a cure.

Francesco, photo by Cinzia Losito, mother for ©Vitadamamma with the sole purpose of promoting fundraising for her son.
Francesco, photo by Cinzia Losito, the mother, for ©Vitadamamma with the sole purpose of promoting fundraising for her son.

Francis and his journey of hope

Journeys of hope cost money, you know. The National Health Service does not cover the expenses and the Paris hospital has placed on the shoulders of mother Cinzia and father Salvatore an economic load that is very difficult to bear.

The hospitalization at the Necker in Paris could extend beyond the first tests and, if it should be necessary (as it is assumed it will be), the family will have to take care of the whole.

2 years of ordeal, Francesco’s life made up of hospitals, doctors, bone pain, sleepless nights and suffering. Let’s help him so that this can end.

We asked mum Cinzia to tell us about Francesco

Francesco is affected by a rare disease to which, after 2 years of ordeal, you are still trying to give a name, what symptoms does he show?

Francesco accuses pain in his knees especially at night which does not make him sleep continuously. Cramps in legs and hands. Skin induration. His skin breaks easily and even a small scratch can come out a lot of blood.

On the occasion of the medications that I do personally, when we are at home, she takes morphine because she can’t stand the intense pain. Her hands are swollen and sore but despite all this she colors, she uses plasticine and above all she laughs and makes people laugh. Her gaze conveys strength that every time I don’t have it, I take it from him.

Francesco, photo by Cinzia Losito, mother for ©Vitadamamma with the sole purpose of promoting fundraising
Francesco, photo by Cinzia Losito, the mother, for ©Vitadamamma with the sole purpose of promoting fundraising for her son.

PWhy could this trip of hope to Paris change everything?

Because fighting against the unknown makes you fragile and even if there is no cure for the hypothesized disease, there are still attempts to be made to keep the situation stable.

When Francesco was born, what did you imagine about being a mother and what did you want for him?

I imagined a hard journey (but perhaps so much is a bit exaggerated) I knew, and in reality I know, that he will become something great as well as his heart. He taught me that everything is possible to God and that we must ask for help even when we think we can. I learned that a smile is the best cure of all.

What is your biggest wish right now?

I wish I no longer had to give him morphine so that the pains would disappear, I wish he could walk again, laugh and play freely with his friends without worrying that a new infection on these ulcers would make him fall back into oblivion. but above all I hope that this Christmas you can spend it at home with “your family” (his own words).

That family that he missed so much especially his 7 month old little brother who can’t enjoy it because he would like to get on the carpet with him but can’t sit like everyone else. Or hold him because he doesn’t have the strength to hold him.

You know what, but he found his own way to play with him. She is satisfied with talking to him or making him interested in a cartoon. Alexander (my second son) understood it, in fact he laughs a lot just looking at Francesco and calls him to be able to look into those eyes that scream only desire for serenity and normality even if a special normality like his skin.

#Francesco #child #crystal #rock #rare #unnamed #disease #Lets


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