Ciancaleoni (OMaR): “In the constant collaboration between OMaR and OPBG and in the ability to work as a team lies the ‘sliding doors’ of this story, and the different future that Mouhamed will have”.
Mouhamed’s life begins in Senegal in July 2022, with a difficult debut: it is immediately evident that the child is suffering from a rare malformation, and that in his country no one has the possibility to help him. However, a few days later, thanks to the initiative of his father, the life of the little one takes a different turn. The director of the Rare Disease Observatory, Ilaria Ciancaleoni Bartoli, receives an email sent by a young Senegalese resident in Milan. “I had very hard news – it was written in the email – my baby was born with a rare disease called ‘bilateral anophthalmia’ and in Senegal they can’t do anything. I would like to take him to an Italian hospital as soon as possible”. Attached is a photo of a baby in swaddling clothes, Mouhamed, whom he has not yet embraced but for whom he is already seeking every possible help to deal with the rare malformation syndrome of the eye which has deprived him of eyeballs since birth.
“It was easy to turn away and say ‘we can’t do anything’, but resignation and indifference have no place in our mission, we had to at least try – says Ilaria Ciancaleoni Bartoli – I contacted Dr. Andrea Bartuli, head of the rare disease clinic at the Bambino Gesù Children’s Hospital, and whose response was immediate and efficient: in this contact, in the constant collaboration between OMaR and OPBG and in the ability to team up lies the ‘sliding doors’ of this story, and the different future that Mouhamed will have. Dr. Bartuli not only referred us to the International Assistance of the Bambino Gesù Children’s Hospital in Rome but also immediately involved a network that moved for a single purpose, to help Mouhamed.” Indeed, thanks to the humanitarian program of the Holy See Hospital, the child, without any form of health care, once in Rome was able to carry out the necessary checks and receive all the treatment that his family was unable to afford.
Ocularistica Italiana and KIM Association collaboration
Dr. Alessandra Modugno, ophthalmologist and director of Ocularistica Italiana, a center specializing in the production of ocular prostheses for children with congenital malformations, was crucial. Immediately understanding the family’s logistical needs, she involved the KIM Association, and specifically the coordinator Corrado Roda, to welcome mother and child for the entire period necessary to carry out follow-up visits at the Bambino Gesù Children’s Hospital. In fact, the family arrived in Rome on March 1st and here the child received all the health care he needed.
“For many years, in collaboration with the UOC of Ophthalmology, we have dedicated a path to Bambino Gesù for children with rare eye diseases such as anophthalmia, microphthalmia and coloboma – explains Dr. Andrea Bartuli – Like most rare diseases, these are conditions that require close collaboration between different specialists to build a network of integrated skills such as to guarantee children the best diagnostic and assistance resources and parents access facilitated to care. The group also makes use of external skills such as those offered by Dr. Modugno, a true artist of ocular prostheses. Welcoming Mouhamed, a foreigner and without health care, then also required the help and support of many other people, first and foremost the International Assistance of our Hospital”.
Anophthalmia
“Anophthalmia is a pathology that determines the complete lack of formation and growth of the optic vesicles, or their degeneration – explains Dr. Alessandra Modugno – During uterine life the eyeballs represent the same outpouring of the brain and this is why an eye transplant cannot be performed: the lack of eyeballs can only be compensated for by prostheses. Therefore, prostheses of increasing size were applied to Mouhamed to gradually expand the cavity where there is no eye. At the end of this first phase, together with his mother, he was able to return to Milan to reunited with his father. Obviously Mouhamed will never recover his sight and will have to continue in the rehabilitation process, but even through prostheses, some people manage to make their mood understood from a glance, a sign that these devices have achieved a very high aesthetic quality”.
“Our collaboration with Dr. Modugno began several years ago and also in the case of Mouhamed we have made ourselves available to offer support completely free of charge“, says Corrado Roda, Coordinator of the KIM Reception Center. “The KIM Association, in fact, was born 26 years ago from the desire to give refreshment and hospitality to seriously ill children who are in conditions of poverty and need to undergo medical treatment in Italy. The association offers mothers the opportunity to learn a trade, thanks to the creative pottery and sewing workshops, we are able to offer a learning path of the Italian language to mothers and their children. We also provide our guests with assistance on legal issues related to entry procedures in Italy and the permanence of the family unit on Italian territory for the entire period necessary for treatment. Finally, we guarantee an accompaniment service to hospitals for the medical visits they have to undergo“. In Mouhamed’s case, their role was fundamental, just think that Mouhamed’s mother only speaks Wolof, a West African dialect, but thanks to the collaboration with another mother residing at the premises of the KIM Association and the intermediation and the personnel of the Bambino Gesù Children’s Hospital it was possible to explain everything to her and proceed.
