When Saif arrived in Italy he had only nine months to live. Accompanied by his parents, the Palestinian child was welcomed in March at the hospital John XXIII of Bari because he suffers from type 1 SMA, the most serious form of spinal muscular atrophy, a rare genetic disease in which motor skills are progressively lost, making daily gestures such as sitting and standing difficult, and in the most serious cases swallowing and breathing.
Saif and his family lived in Ramallah, in the West Bank, and with the outbreak of the war between Israel and Hamas in the Gaza Strip, the situation became tense and complicated in the rest of Palestine. Starting a therapeutic process there would have been too complex. For this reason, it was Famiglie Sma, the Italian association of parents of people with spinal muscular atrophy, who pushed for his immediate hospitalization. «A relative of the family who has lived in Italy, in Florence, for many years, contacted the association to report the child’s case» he says Anita Pallarapresident of Famiglie Sma. «We responded to his appeal and immediately asked for the support of the Puglia Region to ensure the little boy receives the best care. Through the commitment of the regional body, the family also obtained an entry visa to our country from the embassy».
“The child is responding very well to the therapies. He is starting to move his arms, legs, head, he can sit up, he has a nice high tone of voice. In Palestine, due to the ongoing war, it was not possible to guarantee him the right therapy, receive respiratory support and the necessary assistance and his life would have been in danger.” Pallara he is particularly enthusiastic. She is the one who followed the entire journey that took little Saif to Rome’s Fiumicino airport on board a scheduled flight from Jordan. «To welcome them», she continues Pallara, “there was a pediatric resuscitation ambulance sent by the Puglia Region and the hospital which sent doctors and nurses to ensure all the necessary care.” In Bari the child and his parents were taken care of by the department neurology of John XXIII and followed by Dr. Delio GagliardiThe child was then hosted in the regional reference center for SMA screening activities, the medical genetics laboratory of the hospital Of Venus of Bari directed by Dr. Mattia Gentilewhere the blood samples needed for genetic testing to confirm the diagnosis were taken.
“It’s a beautiful family that has boundless love for their child,” he continues Pallarawho visits him in the hospital every day. “They feel very lucky and are aware of the great opportunity they are having. Although obviously they are very worried about the situation in Palestine, where their other four children are.” About three months after his arrival, Saif is making significant progress, thanks to the care he received, the administration of Zolgesma and the continuous monitoring he is undergoing. “When this period of assistance in Italy is over, they will return to Palestine. Most likely it will happen in mid-July. The child will have to come back to us once a year for tests and check-ups. There will certainly be difficulties when they return home, we hope that the situation will soon improve. In the meantime, our association has come into contact with doctors in the area to ensure the continuation of physiotherapy and clinical support”. Certainly, “Saif’s mother and father”, notes Pallara «they would like to bring their experience back to Palestine and be an example for other families who experience the same problem, who have family members with the same illness, to help them. Because the lack of therapeutic opportunities, of drugs, of hospitals, of doctors, represent an obstacle to the lives of those who live with this pathology.”
“I thank you so much for the help offered to my family and for the safety of having received this drug,” he says Israel, Saif’s mother, who together with her husband Moist met the president of the Puglia Region Michele Emiliano. «To treat him in Ramallah he was given a drug, then the war broke out and the supplies of these medicines were interrupted here too. If we had stayed there, my son would have died.”
Since December 2021, when neonatal screening began in Puglia, which allows for the early identification of numerous diseases, even very serious ones, within the first days of the child’s life, 64,830 newborns were tested and seven cases were diagnosedin addition to the small Saif arrived from Palestine. The diseases subject to mandatory screening are those for which therapy is effective if administered promptly and which require early diagnosis to identify the cure. «Thanks to the work done as a team by Sma Families and the Puglia Region» he concludes Pallara “we have succeeded in an undertaking that initially seemed impossible. Thanks to the will and good health practices implemented in our region, we have succeeded in a small great miracle.”
