Parents of affected children are calling on the Basque health to promote the draft submitted by the Biscayne Hospital.
«We have been good to the Administration for twenty years.» I remember the first time I went to the Department of Health, in Vitoria-Gasteiz, ten years ago. They assured me that the Cruces reference centre would be a reality that same summer. “And here we are tired of being silent.” Jesus Maria Rey is a Biscayne of Lekeitio who has a daughter of 13 years with a inborn metabolic disease. She suffers from her birth. “I know that by 18 she will be bad.” Surely the kidney or liver will fail, even though we do everything very well. ‘We control what she eats, although sometimes we have to face our own relatives’.
Rey, like Cristina Leria, Eusebio Temprano and many others, is part of the Association of Euskadi PKU and other metabolic disorders, which has been ‘ war footing’ to claim the Basque Government the conversion of Cruces into a refence centre for the treatment of these diseases. They do so because they know that the recognition of this category would allow them to enjoy services that they do not have now. “There is no monographic consultation and we miss an interdisciplinary monitoring.” ‘It Cannot be that our children get older and there is nobody in the hospital who knows what to do with them, except for the two paediatricians specialists’, Temprano protests, President of the Spanish Federation of patients.
He says, that Cruces, already acting as the only centre of Euskadi for this kind of pathologies and serving the neighboring communities, should have a team of Tandem Mass to expand the number of diseases diagnosed at the time of birth, strengthen their laboratories and a better dietetic and psychological care for patients and their families.
The only treatment followed by these guys is based on a diet. «They may eat only fruit – not dried fruits-, vegetables, legumes, and some special food that, moreover, are extremely expensive.» «What others are spending on chops, we have to spend on pasta, rice and all of that ‘, complains the teacher from Lekeitio.
It is not easy to monitor the kids’ food, who must take very precise quantities of the products they eat. This is the only way to prevent the a metabolic decompensation which could cause them, little by little, more and more damage to the brain and other vital organs. “You can not exceed a certain amount of proteins in the diet, and if you give them twenty grams of Tenderloin, probably with that amount they have covered the maximum amount that can be taken throughout the day.” «That means a huge sacrifice for these children who, in addition to a diet that differentiates them from the rest of his friends, it is monotonous, unrewarding, and as they grow, it often leaves them unsatisfied and with hungry», details Temprano.
Parents say they need constant nutritional advice to improve the status and quality of life of their children. “It cannot be that the dietitian attending us has only a few hours a month to carry out our food assessments”, she complains. Pku patients have the added problem that minor carelessness in the diet can have serious consequences in the fetus when they are pregnant, says Cristina Lena
Lena, neighbor of Leioa (Vizcaya), has a 26-year-old son who has phenylketonuria. According to what she tells, as soon as the youngster eats more proteins than the recommended, he becomes very nervous, as if he were ‘hyperactive’. Because of the age of her kid, she acknowledges the necessity of a of psychological therapy service. “They have a very important mental burden.” «I admire them», she says. «Imagine that they cannot eat anything, they are invited to a birthday party or they go out for dinner and they have to follow the rules»
Many do not go to class dinners and their parents have withdrawn to make them go to fieldtrips and school trips. The son of Cristina, who is already somewhat older, has invented a noble lie to avoid having to provide explanations. «He says that he is a vegetarian.He does not want to be treated differently for having this disease. «He fights his demons eating French fries, salads, and peppers». And regarding relationships. «The disease affects them a lot;» «but that is another story»