At the age of thirteen, Daniel has already been to Russia, London, Cuba and has visited different places on the peninsula. The melodic tradition of his house - his mother is a music teacher and his father plays the guitar - has fostered a great musical sensitivity in Daniel. His mother, Magdalena Pereda, says that since he was little he has preferred to be with people than to share games with the dolls they gave him, and to which he barely paid attention. It shows. Daniel is a very social boy and becomes a pleasant company, who smiles constantly and interrupts conversations with unexpected kisses that he throws from his lips. Daniel sharpens his ear when he is surrounded by people and is receptive to everything that happens around him.
Daniel has traveled a lot, but his destinations were determined by something different than the desire to know new places. "After traveling the world looking for solutions, we have found a surgical technique that slightly improves his quality and allows children who are not very affected to have greater mobility. It allows them a better position in terms of sitting, standing, walking or opening their hands", his mother tells us, because Daniel is a child with cerebral palsy.
His parents always followed and pursued the different treatments and medical advances that would alleviate the effects of cerebral palsy. People affected by this type of pathology have, for example, a lot of stiffness in their limbs, which makes mobility difficult. It is the so-called "spasticity", a condition that affects the motor activity of people and that is characterized by tense or rigid muscles and deep and exaggerated tendon reflexes. The reduction of spasticity avoids physical deformities and decreases pain, which allows improving the condition of patients.
They tried acupressure, a method to stimulate movement, but it was "too aggressive for the child. He cried a lot". They also tried with the most traditional method of rehabilitation, the Bobath method, but they saw that the results were very slow. Treatments in the water or with a hyperbaric chamber, trips to London, to Cuba were other alternatives that turned out to be ineffective. Until in 2002 they learned about the method patented by Ulzibat. "We found out that some Russian doctors were coming to operate in Barcelona and we quickly contacted the Spanish liaison". Antonio Serrano is the representative of the families in Spain. Hundreds of Spanish families have already traveled to Russia to have surgery. Daniel's family was one of them. In 2003 they mobilized and went to Tula, where the Institute of Clinical Rehabilitation is located, to perform the operation, because in Barcelona "the doctors came confidentially. Foreign doctors are invited to operate in other countries as a demonstration, they can do up to three operations, but it is an intervention that is not allowed, because for a doctor to operate in a social security hospital, he has to be recognized by the World Health Organization". It was the first operation of a gradual improvement, which had its last intervention in Lanzarote, with the collaboration of the Cabildo.
Gradual fibrotomy, the treatment
"As my husband is a doctor, Ulzibat (Russian doctor and surgeon pioneer in developing this treatment) wanted him to be present in the operation to see the technique. My husband entered the operating room and saw the operation of another child. It is very simple". Daniel's parents were able to witness one of the most effective methods that have been discovered so far in the treatment of spasticity. The operation lasts barely 15 minutes. According to specialists and relatives of the operated children, it is the least traumatic for the children and the one that provides the best results. It is an interventional procedure that releases the contracted muscle fibers, allows blood flow and mobility of patients. "According to this doctor Ulzibat, when there is a brain injury, the neurons cannot be recovered, what is treated is to release the muscles, to facilitate mobility", explains Magdalena about a method that she has applied to her son on three occasions. Ulzibat argued that the treatment is not only palliative, since, contrary to what the orthodox current believes, the injury is not only in the brain but in the muscle itself, so it can be intervened on it. "What happens is that since these incisions are very small, two or three centimeters in diameter, it covers a very small part, that is why the operations have to be repeated. They are operations that depend on the injury that the child has and the growth, because as they grow, they need more operations. They do not have any type of risk since the anesthesia is a general sedation". In fact, Daniel's mother, took advantage of the trip to Russia to treat with this technique the fibromyalgia she suffers from. "When you have a very large stiffness, you have to go little by little so that the muscle is placed. The improvements are small, but progressive".
"They touch the temples for the sight, the jaws for chewing, the neck, the back, the hips... they go where they need more mobility. At most it is usually an annual operation" Despite the advantages, the treatment is expensive. "The operation costs 2,400 euros, plus the plane tickets. We went twice, once in January and once in August 2003. Between trips, stays and flights with connections it cost almost five thousand euros".
The Cabildo gets the medical team to operate in Lanzarote
Rosana also has a daughter with cerebral palsy. She represents a group of relatives affected by this pathology. Last July 24, she went with other relatives to the Insular Health Board to thank the Cabildo for supporting the medical team that gives the treatment and facilitating the operations to be done in Lanzarote. "The representative of them in Spain came and was talking to me. We started the study of the possibility that the technique could be carried out on the Island. Until this date, the parents had to suffer the ordeal of going to Russia, with what that implies of expenses. And then return, that although it is a small operation, they have to have some care and keep certain postural norms", details the Minister of Health, Manuel Fajardo, on how the First Institution carried out the procedures so that it could be done in Lanzarote. "They were going to do an operation in Tenerife, in the end it was frustrated and taking advantage of the fact that they had to go to Mexico we thought of lending a hand so that it could be done here. Through aid with a personal character, which each of them gave and with social aid we got a formula so that it was practically free for them". Magdalena recognizes all the economic support of the Cabildo. "He took care of everything. He wanted to show that this was a good thing for everyone, and he offered to help us", but he also denounces the rejection of the cause given by some businessmen from Lanzarote who were asked for help. "We are in the serious obligation to help each other, especially those who have easy money", he claims when he remembers how at the last moment they denied collaboration.
The operations needed the support of a private clinic, which on this occasion was Hospiten, so that a Spanish doctor would supervise and sign the operation, as required by law, since it is an intervention not recognized by the Spanish health system. Manuel Fajardo exposed the case to the Insular Board knowing that "there is a bureaucratic problem, very curious". Initially, the Cabildo proposed that it be done in the General Hospital, but it was finally not granted. From the Institution collaborated from the economic point of view and the consultations of the Insular Hospital were made available so that the children could be seen.
This team has performed several interventions in Spain. Currently it has a private center in Murcia, which has made it easier for many families to access this treatment. "It is much more comfortable than going to Russia, but the cost is almost the same, because it has a fixed operation fee". Although the center in the peninsula means less trauma of displacement for children, "for a family that is not wealthy it is very difficult. Now in Murcia you save something, but the operation is 2,600 euros, the hospitalization also costs and it comes out to about 4,000 euros", calculates Daniel's mother. Manuel Fajardo points out how curious is a situation that, favoring so much the situation of people with cerebral palsy, is not recognized by the Spanish Health.
Daniel has greatly improved his quality of life, according to his mother, "the fact that he sits in the chair, that he keeps his neck upright. The fact that he has his legs more separated, that he opens and supports his hands or that his wrist turns" is more than one reason to rethink the recognition of this technique. Daniel supports almost completely the soles of his feet, and although he cannot walk alone because he lacks control of his trunk, he is able to take steps with the help of his mother. "That Spanish medicine recognized this technique would be very positive. And for us not to move would also be very positive, more than anything for the children". Magdalena assures that with two more operations she will stretch her right arm, completely. Until the first operation, he had his elbow dislocated and could barely stretch it. "We have to recognize the scientists and the people who fight to improve the lives of others, we have to recognize those values. Because if there is a doctor who has dedicated his life to experimenting on these patients and gets a technique to improve their position, their quality of life, we have to thank him and we have to value it" he comments while watching how his son tries to reach the plate of watermelon on the table. "Lately when he doesn't want to eat, he throws the plate", says the mother "satisfied". Now he can open his hands and his movements have been greatly streamlined.
Favoring the conditions that allow a better quality of life is a responsibility of the States. Especially for those people who are limited, by the circumstances, to autonomously define the conditions of their daily life, such as throwing a plate of watermelon.