Entrevistamos a la familia Rico Salas

Hoy os presentamos a la familia Rico Salas, compuesta por los padres Manuel y María; y los pequeños Martina, Manuel Jr y Gonzalo. Pertenecen a la Fundación Síndrome de Dravet desde hace seis años. Esta familia es consciente de la importancia de la ayuda que les presta su círculo de personas más cercano para los cuidados de Manuel Jr, quien padece síndrome de Dravet: «Somos cinco en casa, pero deberíamos contar con tíos, abuelos y amigos… como nuestra familia». Te animamos a leer su historia.

PREGUNTAS SOBRE MANUEL

¿Con quién juega y a qué?
Manuel es un niño muy inquieto y, aunque juega con todos en casa, tiene muy poca capacidad para centrarse en un solo juego, cansándose enseguida del que tiene entre manos. Suele usar los coches, puzles o una cocinita con frutas de plástico, pero lo que más le gusta es la «Tablet» para ir poniendo vídeos continuamente sin terminar de verlos.

¿Qué le gusta?
Le gusta estar en la calle, montar en el tobogán, andar con la bicicleta y correr del cuidador para que salgan detrás de él a cogerlo.

¿Qué le disgusta?
No le gusta trabajar si la actividad no le resulta entretenida, y tampoco que le pregunten cosas sencillas que no logra entender.

¿Le gustan los animales?
La verdad es que creemos que sí. Cada vez que pasa cerca de un animal tiene una mezcla de sensaciones entre miedo y querer cogerlo. No considero que tenga uno favorito como tal, pero me decantaría por los perros que son los que más a menudo le hacen sonreír.

¿Tiene algún cuento del que no se separe?
Tiene cuentos que suele ver, pero no podemos considerarlo favorito. Lo que si suele es solicitar dibujos favoritos. Alguno de pepa pig con dinosaurios, el circo de miliki, pocoyo….

En casa, ¿se comunica frecuentemente con mamá y papá?
Manuel es un niño que habla mucho, pero al tener la capacidad cognitiva tan inmadura, suele tener conversaciones del tipo quiero esto, vamos a la calle, y cosas así, o sea que las conversaciones son muy básicas.

¿Tiene berrinches con frecuencia y/o situaciones?
No es algo inusual cuando no consigue lo que quiere.

¿Cómo le tranquilizáis?
Solemos ponernos serios y se le pasa rápido porque básicamente es un chillo. A veces se pone muy pesado queriendo algo y nos cuesta aguantarnos sin dárselo, tipo el móvil para ver dibujos o gusanitos.

PREGUNTAS SOBRE EL DIAGNÓSTICO DE MANUEL

¿Qué edad tenía cuándo le diagnosticaron síndrome de Dravet?
Pues tenía 5 meses cuando le dio la primera convulsión y fue bastante larga. Le acabábamos de poner la vacuna de la meningitis y pensaron que podía ser de eso. La crisis se repitió más de una ocasión y a los 2-3 meses “para descartar” se le hizo el Test donde salió alterado el gen SCN1A por lo que al estar genotipado y fenotipado se le diagnostico con unos 9 meses.

¿Conocías la enfermedad?
No teníamos ni idea, y obviamente se nos llenó la cabeza de nubarrones.

¿A quién pedisteis ayuda/consejo para que os guiara?
Pues la verdad que me puse en contacto con profesionales de la neurología que conocían la enfermedad, con la fundación y nos hartamos de leer todo lo que encontrábamos sobre la enfermedad, desde síntomas y evolución hasta futuros medicamentos que estaban en ensayo y posibles soluciones futuras.

¿Sigue algún tratamiento?
Sí. Actualmente toma estiripentol, Noiafren, Depakine, Carnicor y Epydiolex.

¿Ha cambiado con el tiempo?
En esta enfermedad la medicación va cambiando porque empiezan a dejar de hacer efecto. Nosotros empezamos con Depakine y topiramato, y llego a estar casi un año sin crisis, luego fuimos incorporando nuevas y se quitó el topiramato. Ahora las crisis son más cortas y menos “agresivas”.

¿Hubieses hecho algo diferente?
Siempre pienso que se le podría haber dado más terapias de pequeño, aunque siempre ha tenido bastantes.

¿Hay algo que creas que necesita una mejora inmediata del sistema sanitario?
Por supuesto, se debería invertir muchísimo más en investigación.

PREGUNTAS SOBRE EL DÍA A DÍA

¿Cómo de difícil es compaginar trabajo y un hijo con síndrome de Dravet?
Muy difícil. Sin ayuda de un tercero es casi inviable, ya que necesitas tener ojos y manos de sobra para estar pendiente y evitar complicaciones o redirigir sus acciones.

¿Cuál es vuestra rutina?
La verdad que depende. Ahora con el Covid es más complicado porque decidimos no llevar a Manuel al cole por las mañanas. Lo normal es levantarse, desayunar e irse al cole. Recogerle del cole, comer en casa y siesta. Terapias por las tardes o juego didáctico. Vuelta a casa para bañar, cenar y a la cama.

¿Y durante los fines de semana?
Los fines de semana es más relajado. Nos levantamos más tarde, tenemos iPad y desayunamos tranquilos. A media mañana paseo y comemos en casa o fuera. La siesta no se pierde ninguna porque se descontrola un poco. Tarde de juego o paseo, baños y cenas.

¿Cuál es la actividad favorita de Manuel?
iPad, bici o parque con columpios.

¿Cómo está siendo la pandemia con un paciente con síndrome de Dravet?
Difícil, porque le gusta estar en el parque con columpios, la bici y las actividades un poco físicas le vienen muy bien para la coordinación y el descanso por las noches.

PREGUNTAS A LOS PAPÁS

¿Buscáis ayuda psicológica especializada?
A veces sí, por situaciones que nos agobian dada la tensión emocional. Tener más niños requiere un extra para hacerles entender la situación con Manuel y a veces no lo entienden y se ponen a llamar la atención o a gamberrear/pelearse.

¿Acudís al fisio o recibís masajes a menudo?
Sí, pero también porque el trabajo tiene una carga física añadida.

¿Os sentís apoyados y escuchados por la Fundación Síndrome de Dravet?
Sí, siempre. Creo que la tónica es ayudarnos los unos a los otros como podemos, con consejos, escuchándonos y dejar que alguno se descargue con nosotros que somos los que mejor entendemos la situación.

¿Alguna petición?
Un sueño, una meta… la cura del Síndrome de Dravet.
Que nuestros guerreros puedan mejorar lo suficiente para hacer una vida normal, con una capacidad cognitiva suficiente para desenvolverse por este mundo tan difícil que tienen por delante y en continua evolución.
Que el gobierno/CCAA ayuden más intensamente a las familias con algún paciente de enfermedad rara.

PARA TERMINAR

¿Alguna recomendación para futuras familias?
Asociarse a la fundación, informarse, no desesperarse ni aislarse, tener paciencia y no dejar de luchar por nuestros guerreros.
Mucha terapia, hidroterapia en piscina climatizada, apoyarse siempre en la fundación, en un neurólogo experto y enseñar a los bebes a gatear correctamente (alternar manos y pies) antes de intentar ponerlo a andar.

¿Algo que desee añadir?
Todos tenemos que dar difusión a la enfermedad, para que sea conocida y se conciencie a la sociedad de las situaciones que se producen en muchas familias con miembros con síndrome de Dravet, en particular, o enfermedades raras en general.
Lo que no se conoce no se puede investigar.

Desde la Fundación Síndrome de Dravet queremos agradeceros haber compartido vuestra historia de manera tan detallada. 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 Dravet Syndrome Conference 2023 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 Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Thursday 23rd of March 2023. 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 not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

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

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 23rd of March at 8:30 a.m. Upon registration onsite, 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, and lunch and coffee breaks.

Cancellation Policy
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, public health measures, 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 format/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 [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

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 [email protected] before 16th of March 2023. 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 Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. 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. Author’s presentation slides shall not be photographed by any conference participant. 

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 European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2023 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 Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Friday 24th of March 2023. 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 not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

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

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 24th of March at 8:30 a.m. Upon registration onsite, 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, and lunch and coffee breaks.

Cancellation Policy
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, public health measures, 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 format/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 [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification
by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

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 [email protected] before 17th of March 2023. 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 Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. 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. Author’s presentation slides shall not be photographed by any conference participant.

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 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 not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

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

Admittance to the workshop 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 onsite, 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, and lunch and coffee breaks.

Cancellation Policy
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, public health measures, 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 format/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 [email protected] within a minimum of 10 days
prior the event. Failure to attend the event without prior written notification
by email may incur a no-show fee, which shall cover individual organizational,
material and catering costs.

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 [email protected] 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 Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. 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. Author’s presentation slides shall not be photographed by any conference participant.

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 not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and 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 onsite, 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, and lunch and coffee breaks. 

Cancellation Policy
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, public health measures, 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 format/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 [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

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 [email protected] 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 Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. 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. Author’s presentation slides shall not be photographed by any conference participant. 

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.