In the house at via Garibaldi 31 there is a courageous mother, Luisa Caddeo, who has told few fairy tales and made real sacrifices, without respite. She has sacrificed her life for her two disabled children Roberto and Sara Ibba, 100% disabled and affected by a rare disease that forces them to stay in bed even if they are not attached to machines.
Luisa's act is one of love, but also of strength and determination. The same determination with which she fights cancer and that, despite everything, gives her the strength to smile . Against everything, and sometimes against everyone, she carries on, first and foremost, the battle of not failing to provide assistance to her children : "Even though there are no certain life prospects, I want the best for them. Without the best, they wouldn't still be here with me."
Roberto and Sara are two rare treasures like the disease that has struck them since they were conceived. He is thirty, she is 27, brother and sister sleep in the same room. Roberto is calm and affectionate, suffers from frequent epileptic seizures. Sara, beautiful and smiling, is a hurricane of energy despite having only a small piece of functioning lung, she almost never sleeps, moves continuously and suffers from serious respiratory crises that have brought her close to death several times.
The syndrome they suffer from is Ihprf1, difficult to explain to non-experts, still under study. What is certain is that a genetic mutation caused the serious neurological disorder, as attested by a medical study dated 2017. In the world only 11 patients have this syndrome and Roberto and Sara are the only two in Europe.
Facial dysmorphisms, reduced muscle tone, psychomotor delay, epilepsy, absent speech, sleep disturbances are just some of the problems that the two brothers have to live with and, with them, the mother who assists them on a daily basis.
Luisa was living in Germany when Roberto came into the world: «I spent the first three years of his life with him in the hospital, hoping they would find a solution to the disease. I was just 24 years old». Then Sara was born: «They laughed in my face when I said she had the same disease as her brother». Yet her suspicions were well-founded: «Same diagnosis for both of us. I decided to return to Sardinia, with two suitcases and my two children».
Luisa, in Assemini, found help: «A friend put a house at our disposal. The children attended elementary school and also the Aias center in Decimomannu. But over the years their situation has worsened, they can no longer leave the house».
In the meantime, Luisa has met a new life partner: "I told Fabrizio to run away while there was still time. The result? Two years ago we got married." On the wedding day, Roberto and Sara were also on the beach, on one of their last outings in the open air.
Luisa Caddeo can't work: "I had to rely on subsidies. Until they turned 18, we were entitled to an accompaniment of 400 euros. Now we take advantage of the sector laws for everything: medicines, clothes, oxygen tanks, food thickeners must never be missing: "The ASL gives us many things. But when they run out, we have to buy them out of our own pockets. The money isn't enough."
The house where they are is inadequate, so they ask the Municipality for help in finding them a more suitable accommodation: "We need a single house on a flat. We have already received two complaints about the noise caused by the boys".
Sara Saiu
