This is the story of a mommy and her three little children. We wish we could write for a long time on, and also write a fourth story in the future. I don’t know if we succeed, but we want to do all our best, and we’ll do any sacrifice needed, because the joy that we had in our life, beneath all the pain and sorrow, is and will always be priceless and gave sense to our life and to our marriage.

When Luca was born, October the 23rd 1992, everything was ready: a nice room, nice clothes, chosen for months before and most of all love and will of embrace him. He kept us waiting for ten days after the end of pregnancy and had a hard time while coming out, and the doctors took the cupping-glass to help him. All this pain was quickly forgotten. Luca was really a nice baby boy weighing 3.7 kg (8 lbs., 2 oz). We spent the first day at hospital adoring him and I was keeping him tight – it was my first child and I couldn’t believe keeping and embrace him. I was really an happy mom.

All this last only one day and then the hard life and the pain came. Luca and I were carried quickly to the Neonatal division of a bigger hospital. Everybody wanted to assure me that it was something that was going to solve soon, but no-one really knew what was happening to Luca. It took one and a half days to find out that it was probably a metabolic disease – Propionic Acidemia. It was only three days since his birth day, but these three day without a cure were too much. I understood by myself what no-one had the heart to say “Luca was in coma.” His nice room and clothes were useless now, the only thing I could give him was love, because we really knew almost nothing of the disease. It took a few days before Massimo, the grandparents and I accepted this disease, and it wasn’t that easy. Luca was in the incubator, full of wires and tubes and tube fed. 

In the next days I learned to put the tube through the nose and throat, because this tube, as the doctors taught me, was the only thing that could save him with an ipoproteic (low protein) diet. He didn’t like eating from the bottle and he was vomiting very frequently, and each day tube-feeding was needed. Unfortunately Luca couldn’t stand it. The first days suffering, plus a couple of days with the pump not working (and no alarm sounded and no-one looking at the bottle!), were to much for my baby boy. After 46 days he died at the hospital of an acute episode of organic acidosis. Nobody, even the doctors, could explain a sudden death like that. Luca was coming home in a few days, it was already planned.

I was really desperate, but when one year after Davide was born, I understood that the great sacrifice of Luca was not useless. This genetic, autosomic recessive disease could arise every time.

It was November the 24th of 1993 when Davide was born, he weighed 3.9 kg (8 lbs., 9 oz.), looks really like Luca and was the picture of health, but after one and a half day started with the first symptoms of Propionic Acidemia. Needless to say our fear for the future.
Davide should not die and, from that day on, we are still fighting for that and to give him an happy and serene life. Thanks to the prompt medical care Davide had no crisis and with the help of night tube feeding and day bottle feeding, he was growing regularly. He took my milk (he was not breast fed,) and at the beginning he was really a great eater. When after one and a half months came home from the hospital, things were going well. We had our weekly hospital visit with blood and urine tests. This for Davide became soon unbearable (being fatty the blood test was made from the neck vein and he was kept tight by two people). We are still working now to get rid of the fear and mistrust he has for the other people (for example – we cut his hair with the machine, because he doesn’t like to enter the barber shop!).

At the fifth month things got worse. After a visit in Paris, to the best European center for metabolic disease, we stopped with the night tube feeding. Davide gradually stopped eating by mouth. After 15 days at hospital trying to make him eat different food from my milk, we came home full of sadness, tubes and syringes, ready to start this new experience, that life reserved for us.

With pain and uncertainty, Davide was growing, this life full of tubes, syringes and night pump. It was very difficult as he vomited. We have to thank grandparents that were with us and helped us practically and morally.

With all this Davide was always happy and smiling. I thank God for this. His little angel was helping him and gave him a really good character. He made physiotherapy to diminish the hypotony and when he was two years old started walking. The language came a little later too, but he was very smart and intelligent and this was encouraging. Time was passing, but eating by mouth was still a dream. At two and a half years he started to drink water (still now it is the only liquid drink accepted) and at 3 we started logopedy and other playing activities in a children specialized center near home. We always kept Davide with attention and care, limiting winter contacts with the others to avoid flu and fevers, and also the way he was eating, limited the social aspects with the others. Now it was time to open the real world to him. He was a little boy like all the others with the right to live and have fun. At the beginning it was difficult for him to accept teachers, even if the only try to make him play, he was still afraid of doctors and strange rooms. 

As usual, time and patience solved a lot of problems, moreover taught by a good psychologist, we learned to be open with him, and to talk with him, and to tell him his story, and to explain to him the way we took him there. This worked well and he accepted this in a positive way. His resistance was less and was less defensive with the other people. With time he started speaking better and now is only a few below the level with the fine motor skill, while gross motor skill and language are ok. We learned the importance of telling the truth always to children, even if when it sounds difficult. They know how to take it and their easy way to accept it is really helping us to accept it better.

On January 3rd 1998, as promised, Davide make the bigger step: as my birthday present, he started to eat by mouth. The joy was immense and now after almost one year, he makes four meals per day, without the tube (it’s used only when he has fever or flu). His meals are still liquid (milk, fruit juice and caloric formula), but for now it’s ok (by the way for my next birthday he promised to start solid foods, like rice and pasta). He’s going to pre-school morning and afternoon, coming home for lunch. Obviously contact with the other children raise the chance to get flu and fevers and this means that he’s going to school one week and is home next week. We know that many difficulties will come again, but we are full of hope and we really trust our little boy, little but so big to accept all the rules of a difficult life, full of time schedule and food schedule. We are really proud of him and love him so much.