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Entrevistamos a la familia García de Santos

La familia García de Santos está formada por los padres Óscar y Alicia y los hijos Raúl, Pablo y Diego. Pertenecen a la Fundación Síndrome de Dravet desde hace 10 años y saben lo difícil e importante que es ir aceptando poco a poco el diagnóstico de su hijo mayor. Al principio, buscaron información en internet y ¡no se lo aconsejan a nadie! Ahora, son un ejemplo para futuras familias. Sus honestas respuestas visibilizan las dificultades por las que han pasado y cómo las han sobrellevado. Te invitamos a leer las experiencias de su gran familia.

PREGUNTAS SOBRE RAÚL

¿A qué juega?
Le gusta mucho hacer puzles y jugar al baloncesto y al fútbol.

¿Le gustan los animales?
¡¡Le encantan!!

En casa, ¿se comunica frecuentemente con mamá y papá?
Sí. Mamá y papá le entienden perfectamente.

¿Tiene berrinches con frecuencia?
No. Por la mañana a veces se levanta «con el pie cambiado»: no quiero vestirme, no quiero desayunar, no quiero ir al cole… Fuera de esto, nada más.

¿Cómo le tranquilizáis?
Dejándole un rato hasta que se le pasa. Rápidamente vuelve después a su estado normal.

PREGUNTAS SOBRE EL DIAGNÓSTICO DE RAÚL

¿Qué edad tenía cuándo le diagnosticaron síndrome de Dravet?
2 años. En el Hospital La Paz, el Dr. Martinez Bermejo.

¿Conocías la enfermedad?
No.

¿A quién pedisteis ayuda/consejo para que os guiara?
Al Dr. Martinez Bermejo, quién le diagnosticó la enfermedad…. y a Internet (¡no se lo aconsejo a nadie!). No estábamos preparados para leer de sopetón lo que nos tenía deparado el futuro… es mejor irlo descubriendo poco a poco, dando tiempo al tiempo, a la asimilación y aceptación de la realidad.

¿Sigue alguna terapia? ¿Cuál/es?
Sí, hace natación adaptada, terapias para conseguir mayor grado de dependencia, y apoyo escolar.

¿Han cambiado con el tiempo?
Sí, las hemos ido adaptando con la edad. Ha hecho equinoterapia, fisioterapia, logopedia….

¿Hay algo que creas que necesita una mejora inmediata del sistema sanitario?
El diagnóstico lo más rápido posible, es esencial, aunque en esto ya hemos mejorado un montón. Es fundamental ponerle nombre a lo que te pasa para poderlo tratar convenientemente.

PREGUNTAS SOBRE EL DÍA A DÍA

¿Cómo de difícil es compaginar trabajo y un hijo con síndrome de Dravet?
Ufff… ¡pues mucho! Es fundamental en nuestras vidas la ayuda incondicional de los abuelos y de toda la familia. Por otro lado, en nuestro caso tenemos la suerte de trabajar en empresas dónde siempre se nos ha apoyado y dado mucha flexibilidad. Sin ambos (FAMILIA + flexibilidad en el trabajo), hubiera sido imposible mantener a ambos (niño + trabajo).

¿Cuál es vuestra rutina?
MAÑANAS:
Mi marido madruga mucho y por la mañana estoy, la mamá, yo con los abuelos. Raúl y sus hermanos van a distintos colegios. Mi padre (el abuelo) se encarga de llevar a Raúl a la ruta. Yo y/o mi madre (la abuela) nos encargamos de los 2 pequeños.
TARDE:
Mi marido recoge a Raúl de la ruta y se encarga de llevarle a todas sus terapias. Yo me encargo de los 2 pequeños.
NOCHE:
A eso de las 19.00-20.00 coincidimos todos en casa: ducha, deberes, cena y la cama.

¿Y durante los fines de semana?
Planes familiares comunes. Aquí todo bastante más fácil y fluido.
Quitando este último año, siempre hemos intentado seguir con una vida lo más normal posible, haciendo durante los fines de semana muchas actividades: estar en el pueblo con la familia, montar a caballo, casas rurales con los amigos, eventos deportivos de los hermanos pequeños, excursiones y caminatas en la sierra, viajes a la playa, ciudades españolas…. Con Raúl no hemos salido fuera de España en sus 13 años de vida.

¿Cuál es la actividad favorita de Raúl?
Le encanta estar con gente conocida: la familia, los amigos habituales… Le gusta mucho ver el futbol acompañado, los aperitivos compartidos, los animales…

¿Cómo está siendo la pandemia con un niño con síndrome de Dravet?
Bueno… pues él no lo ha sufrido mucho. Estar con su familia más de lo habitual, ¡le encanta!

PREGUNTAS A LOS PAPÁS

¿Buscáis ayuda psicológica especializada?
No.

¿Acudís al fisio o recibís masajes?
El padre, sí. Yo, no. Mi mejor terapía es el deporte: Nado 3 veces a la semana y corro 2 días a la semana desde hace 25 años… Esto me ha ayudado muchísimo. Como yo digo «mis palizas desestresantes»… Imagino que solo el que haga deporte de manera habitual y «disfrute» como yo, podrá entender esto.

¿Os sentís apoyados y escuchados por la Fundación Síndrome de Dravet?
Sí. Siempre que hemos necesitado algo, se nos ha escuchado.

¿Alguna petición?
Continuar trabajando en la investigación y sin perder de vista nuestro objetivo: LA CURA.

PARA TERMINAR

¿Alguna recomendación para futuras familias?
Ufff… pues yo creo que lo mejor es que no te cuenten mucho e irlo descubriendo por uno mismo. Hay días que no hay consuelo posible, y otros días donde las cosas se ven de manera mucho más positiva… Aceptar la realidad NO ES FÁCIL, pero es fundamental para ayudar a nuestros niños.

Desde la Fundación Síndrome de Dravet queremos agradeceros enormemente haber compartido vuestra experiencia de una manera tan clara y honesta. Sois una familia referente y seguiremos avanzando en nuestra lucha juntos. Visibilizar el síndrome de Dravet ayudará a otras familias y entre todos haremos cada día más ruido para potenciar su investigación.

Muchas gracias.

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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.