I don´t suppose Eva Fernández Bódalo from Toledo is on your list of heroes – she wasn´t on mine until she wrote into El País. Eva is the mother of a little girl with the rare disorder, Congenital Central Hypoventilation Syndrome, derogatively known as Ondine´s Curse. The child requires care round the clock, meaning Eva can´t go out to work to help pay the medical bills.So what´s the nature of this curse? What or who is Ondine?It all goes back to mythology, and as anybody who´s read that kind of literature knows, it´s invariably bitingly cruel. Ondine, a water nymph with an unfaithful mortal lover, cursed him so that when he fell asleep he would forget to breathe and die.
And so, as Wikipedia tells us, CCHS Ondine´s Curse is an “inborn failure of autonomic control of breathing” with other tremendously serious complications. There are some 1,000 cases worldwide, mostly affecting children and it has no cure. Many sufferers depend on ventilators, some 24/7, involving permanent tracheotomy. Without medical aid these children die from respiratory arrest in sleep.
The 2009 Ley de Dependencia was supposed to step in and relieve Eva of part of the financial hardship of her situation. She was “contracted” as the carer of her daughter to the tune of €300 a month, but like so much in Spain the plan hasn´t worked ….bigtime.
Since 2009, the Spanish State (the Central Government and the Autonomous Community of Castilla-La Mancha) has owed Eva Fernández some €6,000. Despite many Royal Decrees on the subject, and supposedly due to “la crisis,” she is now to receive this money split into yearly payments over the next five years. She will get the last one, then .… in 2016.
Concurrently with this, the payments Eva Fernández is entitled to now have also stopped. In September she still hadn´t been paid for June. She has made a round of calls to the Consejería, Hacienda and the Junta de Castilla-La Mancha but, predictably, nobody knows anything, except that the money´s not there.
So five years after the Ley de la Dependencia was decreed, Eva Fernández struggles on heroically to care for her daughter with no help of any kind from the State.