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Entrevistamos a la familia Selga Sánchez

Hoy os presentamos a la familia Selga Sánchez, compuesta por los padres Juan, María Teresa y su bebé de 20 meses, Jorge. Pertenecen a la Fundación Síndrome de Dravet desde marzo del 2020, por lo que son una de las familias que se han unido a la Fundación más recientemente. Sus experiencias y sugerencias nos ayudarán a difundir el síndrome de Dravet.

PREGUNTAS SOBRE JORGE

¿Con quién juega y a qué?
Jugar con pelotas y ver libro de animales, con el abuelo le gusta tocar la guitarra y le encanta jugar a los bolos.

¿Qué le gusta?
Los dibujos animados de YouTube ABC Kids TV (Cocomelon) y las galletas.

¿Qué le disgusta?
Ponerlo boca arriba.

¿Le gustan los animales?
Sí, el perro.

¿Tiene algún cuento del que no se separe?
Cuento de animales.

En casa, ¿se comunica frecuentemente con mamá y papá?
Sí, también con sus abuelos maternos.

PREGUNTAS SOBRE EL DIAGNÓSTICO DE JORGE

¿Qué edad tenía cuándo le diagnosticaron síndrome de dravet?
6 meses.

¿Conocías la enfermedad?
No.

¿A quién pedisteis ayuda/consejo para que os guiara?
Nos ayudaron en el Hospital Materno Infantil de Las Palmas de Gran Canaria, y después conocimos la Fundación.

¿Sigue algún tratamiento?
Si, Diacomit, Clobazam, Fenfluramina y Depakine. Empezamos el 27 de mayo con Epydiolex.

¿Ha cambiado con el tiempo?
Sí, hemos estado subiendo y bajando cantidades y añadiendo nuevos fármacos para encontrar más estabilidad en el niño.

¿Hubieses hecho algo diferente?
Sí, tendríamos que haber empezado la estimulación temprana antes. Nosotros empezamos a los 18 meses.

¿Hay algo que creas que necesita una mejora inmediata del sistema sanitario?
Un mejor protocolo para seguir cuando nos dan la noticia (más consejos de la vida cotidiana, ejemplo: temperatura del agua, temperatura corporal, caídas bruscas…), todo lo que pueda ocasionar una crisis, prueba genética…

PREGUNTAS SOBRE EL DÍA A DÍA

¿Cómo de difícil es compaginar trabajo y un hijo con síndrome de Dravet?
El niño necesita mucha atención, 24/7, ayuda externa, no solo de sus padres, por lo que tenemos que encontrar a alguien en quien confiar cuando no están los padres (para cuidarlo).

¿Cuál es vuestra rutina?
Todo muy controlado. Se despierta a las 6 am, desayuna nada más se despierta, ve los dibujos y luego juega con sus juguetes hasta su primera siesta que suele ser entre 9 am y 10 am. Duerme alrededor de 1 hora y luego va a sus clases de estimulación temprana 3 veces a la semana, el resto de los días se da paseos con él.
Come alrededor de las 14 h y luego duerme entre 1 hora y hora y media. Por la tarde merienda y luego paseo y caminar. Para la noche, el baño es a las 19:30, seguido de su cena y a dormir sobre las 20h-20h30.

¿Y durante los fines de semana?
Misma rutina, si comemos un día fuera lo dormimos en el carro.

¿Cuál es la actividad favorita de Jorge?
Jugar con la pelota y los coches y motos (subirle a las que tiene).

PREGUNTAS A LOS PAPÁS

¿Buscáis ayuda psicológica especializada?
De momento no.

¿Acudís al fisio o recibís masajes a menudo?
No, solo cuando hace falta.

¿Os sentís apoyados y escuchados por la Fundación Síndrome de Dravet?
Si, la verdad que siempre están enviando información, los chats de WhatsApp ayudan mucho y siempre están disponibles para cualquier duda.

¿Alguna petición?
Más información pública sobre los nuevos fármacos y llevar una vida al día.

PARA TERMINAR

¿Alguna recomendación para futuras familias?
Tener paciencia que los fármacos de hoy funcionan mucho mejor que lo que aparece en la historia del Dravet. Hay mucha esperanza y no nos podemos rendir. Estimulación temprana lo antes posible. Tener a las familias informadas actualizadas en los pasos de las investigaciones.

Desde la Fundación Síndrome de Dravet queremos agradeceros haber compartido vuestra historia. 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.