There are families who cannot point their finger at a map or a globe and freely choose where to go on vacation. The vacation destination? It does not depend on a beautiful sea or the charm of villages and nature, but on an endless list of other factors. The first on the list: the presence of a specialized pediatric hospital nearby, for example. But also the possibility of having home care and a doctor who can intervene in case of need, of receiving shipments of the many materials needed for daily life, and so on. These are the impossible vacations of families with children – but also adults – who live with rare and complex diseases. Impossible vacations like those of Roberta, 8 years old, from Milan, affected by a variant of an already rare disease, acampomelic dysplasia.
Leaving becomes an odyssey, “because often some of these ‘vital’ services for our children are not provided in the region where the chosen location is located, or as regularly happens we run into a bureaucratic obstacle, or an unexpected hitch occurs. And the ordeal of emails, phone calls, outbursts starts (again). We have been on vacation for two days and we spent them between our cell phones and PCs”, Roberta’s father and mother, Maria Coppola and Fortunato Nicoletti, representatives of an organization that supports families with disabilities in Lombardy, the Odv ‘Nessuno è escluso’, tell Adnkronos Salute. “We are going through all this so that our daughter can enjoy the beautiful experience of a beach holiday like everyone else. But if there are already so many things that families like ours have to think about, when you add the complications that come from the fact that we live in a country with truly disastrous disability policies, it is clear why 90% of these families give up on leaving home altogether. And it is shameful that this happens.”
To understand, we need to go back to the moment when we plan the vacation. “We – explains Nicoletti – chose a place in Tuscany because there is the Meyer pediatric hospital in Florence half an hour away and then we have the Stella Maris Foundation, which deals with complex children, in front of the facility where we are. There is also a hospital in Pisa that we can refer to and therefore we know that if something happens we can get by. After choosing the place, there is the email phase. A stress that starts months before and that, as in our case, often translates into nothing being done”. First request for home care: not available.
“But the thing that struck me most – says Nicoletti – is that in the response received in mid-July from the Asst that manages our situation in Lombardy (Santi Paolo e Carlo) it is communicated that we will not even have a pediatrician. The reason – paradoxical – given to the Asst by the local structure is that the period of our vacation, from August 6 to 19, is too short. We are then told that the operators hypothesize that, if our family has relatives in the area, a collaboration with their pediatrician or doctor could theoretically be activated. So if you don’t have relatives, it’s your problem. Nursing assistance? Not even to talk about it”. “If you want to go on vacation – Roberta’s parents also write in a rant on social media – either you trust fate or choose one of the very few destinations where you will have a minimum of support. Here, all this also deprives us of the freedom to move and is highly discriminatory”.
Among the other preparatory calls that need to be made is the one to the nearest emergency room to report the presence of a small patient with complex problems, “but also to the electricity company because in the event of a blackout or power problems a generator is needed to be able to operate vital machinery for the child”. The time comes to pack up, another chapter apart for severely disabled people and rare disease patients. “I travel in a van – Roberta’s father smiles – because I need to have space for two ventilators, two aspirators, bags, materials, a humidifier. All this and much more is up to me, but the rest should be taken care of by those who normally think about it all year round. And instead, after call after call, it happens that the wrong material arrives, specifically a special milk that we use for our daughter’s nutrition. And then you have to make do, burning up vacation days to find a solution”.
Here is what happened in detail: “Those who have a tracheostomy, and maybe even a PEG, to go on holiday should need to rent a truck to transport all the devices (strictly double), the aids and all the consumables. So through the ATS they ask to have some of the material delivered to the holiday destination and here too you have to trust all the saints because if in this case everything arrives in the pre-established times (very difficult), certainly missing material will arrive rather than incorrect material”, says father Fortunato.
In the case of Roberta’s family, of the three deliveries scheduled for August 5, only one (sterile water for the ventilator) was delivered correctly. The second one, relating to nutrition, arrived on time, but with the wrong product that Roberta will not be able to use. And the third one didn’t arrive on the scheduled date, but after a series of phone calls the company made the delivery yesterday at 10. “And thank goodness we did a final check before leaving,” Nicoletti comments. “We also had to get on the phone for the special milk, and after a lot of effort, a quantity was found in Brescia.” However, up until yesterday the courier hadn’t arrived.
“To give you an idea – Fortunato and Maria continue – when faced with a hitch like this, you need to call the dietician quickly and get an alternative plan until the delivery takes place. So we organized ourselves with baby food and other things. An error or delay in delivery for families like ours means much more: it means not having essential, irreplaceable products available, which make the difference between life and death. And the thing that makes us most angry is that we know how to assert ourselves and we manage to quickly resolve everything by moving half the world, but what do all those families who don’t have these resources do? This country has failed on disability, and this is true for all governments”.
“It is useless to make propaganda, to glorify rules by passing them off as new when they have existed for decades and are promptly disapplied, and to know nothing about the real daily life of these families. This is why – they conclude via social media – we will never stop fighting”.
#Rare #Diseases #Robertas #Impossible #Holidays #Odyssey #Families
