fbpx

Entrevistamos a la familia Tomás Martínez

La familia Tomás Martínez está formada por cuatro miembros: los papás y Sara de 7 años y Marcos de 2 años y medio. Pertenecen a la Fundación Síndrome de Dravet desde octubre del 2020. Ellos no cambiarían ninguna de las decisiones que han tomado este tiempo porque, como dicen: «pensamos que hemos intentado hacerlo lo mejor posible, nos hemos guiado por lo que pensamos que era lo mejor para él». Decisiones sabias que mejoran su día a día. Te invitamos a leer su esta entrevista para conocerlos mejor.

INTRODUCCIÓN

¿A qué se dedican mamá y papá?
Mamá está en casa con el peque y papá es conductor profesional.

PREGUNTAS SOBRE MARCOS

¿Con quién juega?
Con papá y mamá, pero sobre todo con su hermana. Juega mucho con las pelotas, los garajes de coches o los cuentos.

¿Qué le gusta?
Las pelotas le chiflan.

¿Qué le disgusta?
Los encajables, los ruidos muy altos le molestan también.

¿Le gustan los animales?
Sí, le encantan todos en general. Juega con nuestro perro Miky a tirarle la pelota y con las gallinas se ríe un montón.

¿Tiene algún cuento del que no se separe?
El pollo Pepe.

¿En casa se comunica frecuentemente con mamá y papá?
Sí, a su manera se hace entender.

¿Tiene berrinches con frecuencia?
A veces, cuando lo sacas de lo «habitual» o de sus rutinas, o cuando no consigue lo que quiere, ¡es un rato cabezota!

¿Cómo le tranquilizáis?
Cantando cualquier canción que le guste, o al pecho si está con mamá.

PREGUNTAS SOBRE EL DIAGNÓSTICO DE MARCOS

¿Cuándo le diagnosticaron síndrome de Dravet? ¿Qué edad tenía?
Marcos tenía 10 meses cuando nos dieron los resultados. Fueron tras la sospecha de Dravet después de tener una crisis al sacarlo de la bañera, por el cambio de temperatura.

¿Conocías la enfermedad?
Conocíamos la enfermedad después de leer mucho sobre epilepsia. Dimos con el Dravet y nos cuadraba como un futuro diagnóstico.

¿A quién pedisteis ayuda/consejo para que os guiara?
A su neuropediatra sobre todo, que se portó, y se sigue portando, súper bien con nosotros.

¿Sigue algún tratamiento?
Si, actualmente lleva Depakine, Noiafrén, Diacomit y el Carnicor como protector.

¿Ha cambiado con el tiempo?
Sí, empezó tomando Kepra y lo cambiaron por Briviact. Después de empeorar sus crisis decidieron cambiar Briviact por Diacomit y de momento llevamos una muy buena racha.

¿Algún consejo para las nuevas familias?
Calma y tranquilidad. No es fácil digerir el diagnóstico, ¡pero juntos podemos con todo!

¿Hay algo que creas que necesita una mejora inmediata del sistema sanitario?
Mucha más investigación y mucha más financiación para buscar nuestra cura. Y más conocimiento de la enfermedad por parte de los profesionales de la salud en muchos hospitales no conocen la enfermedad todavía.

PREGUNTAS SOBRE EL DÍA A DÍA

¿Cómo de difícil es compaginar trabajo y un hijo con síndrome de Dravet?
Muy difícil al no saber con exactitud cuando van a aparecer las crisis y las salidas a urgencias… En nuestro caso mamá es la que se encarga de los médicos y las terapias, si trabajásemos los dos, no sé cómo nos organizaríamos…

¿Cuál es vuestra rutina?
Por las mañanas llevamos a la mayor al cole y cuando no tenemos terapias nos venimos a casa a jugar, ver los dibujos, pintar, cantar… lo que se nos ocurra. Por las tardes, si hace buen tiempo, un ratito de parque y ya ducha cena y a la cama.

¿Y durante los fines de semana?
Menos llevar a su hermana al cole, intentamos hacer lo mismo más o menos para que sus rutinas no se vean muy modificadas.

¿Cuál es la actividad favorita de Marcos?
El baño, sin duda.

¿Cómo está siendo la pandemia con un niño con síndrome de Dravet?
A nosotros nos ha beneficiado el uso de mascarillas. Ha hecho que en casa entren menos virus y por tanto Marcos ha cogido menos infecciones y las crisis han disminuido bastante. En cuanto al confinamiento, unos días mejor que otros, pero en general bien.

PREGUNTAS A LOS PAPÁS

¿Buscáis ayuda psicológica especializada?
De momento no, pero no lo descartamos.

¿Acudís al fisio o recibís masajes?
Marcos sí que va al fisio, ¡los papis no tenemos tiempo!

¿Os sentís apoyados y escuchados por la Fundación Síndrome de Dravet y por los profesionales?
Sí, la verdad es que ha sido un gran apoyo. Hablar con familias que pasan por lo mismo que nosotros es de gran ayuda. Te sientes entendido y apoyado.

¿Alguna petición?
¡¡¡¡Una cura!!!! Ojalá y llegue pronto.

PARA TERMINAR

¿Alguna recomendación para futuras familias?
Que piensen que a pesar de todas las dudas que puedan surgir… ¡lo están haciendo bien! Que luchen y peleen por conseguir lo mejor para los peques. ¡Qué la lucha nunca decaiga!

Desde la Fundación Síndrome de Dravet queremos agradeceros enormemente haber compartido vuestra experiencia y ser personas referentes. Visibilizar el síndrome de Dravet ayudará a otras familias y entre todos haremos cada día más ruido para potenciar su investigación.

Muchas gracias.

Flechas rojas redes sociales
Share on facebook
Compartir en Facebook
Share on twitter
Compartir en Twitter
Share on email
Compartir por correo electrónico
Share on whatsapp
Compartir en Whatsapp

Déjanos tu comentario

Últimas publicaciones

¡Haz tu donación!

Tu aportación se destinará a ayudar a nuestros guerreros y sus familias en su lucha contra el síndrome de Dravet, para conseguir que no pierdan nunca la sonrisa.

Esperanza

Uso de cookies

Este sitio web utiliza cookies para que usted tenga la mejor experiencia de usuario. Si continúa navegando está dando su consentimiento para la aceptación de las mencionadas cookies y la aceptación de nuestra política de cookies, pinche el enlace para mayor información.

ACEPTAR
Aviso de cookies
Translate »
Ir arriba

TERMS & CONDITIONS

The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Friday 1st of April 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will be not be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at research@dravetfoundation.eu.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling, accommodation costs or any other personal expenses.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not include travel or accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance

Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 1st of April at 8:30 a.m. Upon registration at the registration desk, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, lunch and coffee breaks.

 

Cancellation Conditions

Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at research@dravetfoundation.eu.

Name Change

All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at research@dravetfoundation.eu before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data

Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation’s activities. The conference booklet online and in print will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. Conference certificates will be sent to the participants as a PDF document upon request at research@dravetfoundation.eu. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.
Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The Dravet Syndrome Conference 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Thursday 31st of March 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will be not be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at research@dravetfoundation.eu.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling, accommodation costs or any other personal expenses.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not include travel or accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 31st of March at 8:30 a.m. Upon registration at the registration desk, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, lunch and coffee breaks. 

Cancellation Conditions
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at research@dravetfoundation.eu.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at research@dravetfoundation.eu before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation’s activities. The conference booklet online and in print will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. Conference certificates will be sent to the participants as a PDF document upon request at research@dravetfoundation.eu. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.