A polyneuropathy following childbirth has kept her stuck to a bed for years. But the real cage, for Maura and her family, is the bureaucracy. There history by Maura Corazzi is emblematic. For five years, her mother from Valdarno has been hospitalized in room number 20 of the Tuscan Rehabilitation Clinic in Terranuova Bracciolini. Wait for the start of specific therapies, long identified and approved, which would involve the commitment of various medical teams. But every time there seems to be something wrong and the wait continues.
Maura cannot speak, cannot eat or breathe independently, cannot move. Due to the pandemic, he has not seen his three splendid children since September. The only thing it can do is wait: but days, seasons and years pass. With the risk that after so long those coveted therapies may be less effective.
“My wife expects to receive specific treatments provided for in a therapeutic plan of March 2018”, says her husband, Luciano Boschi who has been fighting for Maura for years with great tenacity. The therapies include plasmapheresis, immunoglobulin infusions, boluses of cortisone and the monoclonal Rituximab, to cure this polyneuropathy that arose almost ten years ago, following – Boschi claims – the birth of the third child.
The story of this Maura begins in September 2011. It was supposed to be a moment of great joy for her and her family, but it was followed by a succession of events that led her to no longer be able to move and communicate only through a PC.
“The birth was caesarean – says Luciano – but something did not go the right way. Probably following the anesthetic spinal puncture an inflammation took place, perhaps from a viral infection, which triggered a reaction of the immune system”. According to her husband, it would have developed that which only after a few years (initially the doctors thought of an ALS) was diagnosed as a motor, sensory, inflammatory, chronic myelin-axonopathic polyneuropathy. In a short time the young mother lost the mobility of one foot and then the polyneuropathy began to affect the limbs, from the bottom up to the top. Today she is tracheostomized, completely still – she breathes with the help of a ventilator – she has to feed on Peg, she communicates through an eye pointer and her condition is so delicate that it cannot be moved easily.
“Unfortunately, in recent days – says Luciano – despite the reassurances we had received from the medical teams of Careggi, of the center that hosts it, and of the Local Health Authority, they told us that it will have to be moved to receive treatment. But how can you after so many reassurance and after so many years of waiting to get that far? “.
Maura is in a delicate situation.
“A clinical contraindication to the transfer to another ward – explains her husband – is linked to the potential multidrug-resistant infections of the hypothesized ward. Instead Maura was transferred to the Rehabilitation wing where she still is, just to start the therapies planned for her pathology, therapies that they slow down the immune system and lower its defenses. This is why it is essential that it is treated where it is and as promised “.
Not only. Maura communicates only through the PC that the staff of the Rehabilitation Center has learned to use. Relocating her, according to family members, would not only be risky for her condition, but could isolate her even more.
“This equipment – wrote her husband in a letter addressed to mayors and top health care managers – is essential for the communications of the patient’s necessary clinical support and, in fact, is currently managed by health personnel who have learned its functions well, but it would not be as immediate and easy to use for other operators, causing Maura to be injuriously isolated in the care and relational fields in general “.
The letter sent to the authorities ends with an appeal from Luciano: “I cannot renounce the proposed plans, the words given, the promises. The trust that, through my eyes, was asked of me, that I gave, that I sought and that I received for Maura and for myself. And all for Maura. , for the children Giacomo, Matteo and Tommaso, and ultimately for myself. In order not to be betrayed anymore. We feel gratitude, gratitude and feelings as an “extension of our family” towards the Clinic, and for this very reason, it is necessary, honest that Maura is treated as believed and promised at that facility.
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