An article by our collaborator Luismi Aras

It’s difficult to imagine what a father feels with a 4-month-old girl convulsing in his arms while waiting for the arrival of medical services. A feeling of gravity, of possible death, that doesn’t disappear after hundreds of seizures shared with your daughter.

Dravet syndrome took over our life, my family; it changed the park for the hospital, the intensive care unit and permanent fear. It took years for doctors to give us the diagnosis of this rare disease without cure or possible treatment.

I cried the day they told me that the lucky ones convulsed every 7 days and the less fortunate hundreds of times a day. I wondered if I’d be able to handle it and I cried every day from that moment, almost always in silence.

My anguish increased when I was informed that severe mental retardation was the characteristic of 60% of those affected and that there was only one typical Dravet case in the world that leads an autonomous life. I wondered what would happen if I wasn’t around.

I got mad at the world and demanded a normal life that was owed to me, but they didn’t give it to me and I felt powerless when they told me that 16% of those affected didn’t reach adulthood.

Dravet syndrome is, from a scientific point of view, a theoretically curable disease.

I looked at my daughter and saw Dravet Syndrome, one of the most serious childhood neurological diseases. No cure, no effective treatment.

thought about my condition as a doctor and my scientific education, I read, researched and discovered the future.

A world without Dravet was possible.

Despite the severity of the disease, we know the cause and its mechanism… Dravet syndrome is, from a scientific point of view, a theoretically curable disease.

Luismi Aras – From San Sebastian, doctor, father of 14 year old Nora.

2 Comments

  • Silke Flege says:

    …genau so habe ich mich gefühlt:
    Verzweiflung, als sich der 1. Krampf ohne Fieber mit 3.5 Monaten zeigte.
    Voller Angst, was die Zukunft bringen wird.
    Voller Hoffnung, dass es bei meinem Sohn nicht so schlimm verlaufen wird.
    Immer wieder Trauer und Tränen, wenn die Krämpfe uns als Familie nicht am Leben teilhaben lassen wollten.
    Grosse Wut, wenn Familien mit gesunden Kindern, dies nicht zu schätzen wussten.

    Mitfühlende Grüsse aus Deutschland
    von Silke (Kinderärztin)
    und Jonas (12 Jahre, Dravet-Syndrom)

Leave a Reply

The user who fills in the information requested in this form declares to be entitled to do so and is solely responsible for the accuracy and completeness of the data and information entered, expressly exonerating MJN NEUROSERVEIS of any liability that may arise for this entity on the occasion of the information provided through this form.

Yes, I accept

L’usuari que complimenta la informació requerida al present formulari declara estar legitimat per això i es fa responsable exclusiu de la veracitat i integritat de les dades i informació que introdueix, exonerant expressament a MJN NEUROSERVEIS de qualsevol responsabilitat que es pugi generar per aquesta entitat amb ocasió de la informació facilitat a través del present formulari.

Si, accepto

El usuario que cumplimenta la información requerida en el presente formulario declara estar legitimado para ello y se hace responsable exclusivo de la veracidad e integridad de los datos e información que introduce, exonerando expresamente a MJN NEUROSERVEIS de cualquier responsabilidad que pudiera generarse para esta entidad con ocasión de la información facilitada a través del presente formulario.

Sí, acepto

Save the date

The next Saturday 21st of November at 4 pm, you will be able to know first hand our product: mjn-SERAS.
mjn-SERAS is a healthcare product that sends a warning signal when the risk of epileptic seizures is high, to the affected person and their trusted contacts.

Sign up now!


    mjn-SERAS is a medical device with CE marking according to the European Directive 93/42/EEC and the Royal Decree RD. 1591/2009.
    Contraindications: Do not use the product if you suffer from an infection in the ear canal or if you suffer from a skin lesion in the vicinity of the product's area of influence.
    Considerations: This medical product works with an APP only on Android phones. The results tested are 96% sensitivity and 94% specificity.
    CPSP20103CAT.

    Save the date

    El próximo sábado 21 de noviembre a las 4 de la tarde, podrás conocer de primera mano nuestro producto: mjn-SERAS.
    mjn-SERAS es un producto sanitario que lanza una señal de aviso cuando el riesgo de crisis de epilepsia es elevado, a la persona afectada y a sus contactos de confianza.

    ¡Inscríbete!

      mjn-SERAS es un producto sanitario con marcado CE conforme a la Directiva Europea 93/42/EEC y el Real Decreto RD. 1591/2009.
      Contraindicaciones: No usar el producto en caso de padecer una infección en el canal auditivo o en caso de padecer una lesión cutánea en las proximidades del área de influencia del producto.
      Consideraciones: Este producto sanitario funciona con una APP solo en teléfonos Android. Los resultados testeados son 96% de sensibilidad y 94% de especificidad.
      CPSP20103CAT.