The Ramos’ Journey with Bainbridge-Ropers Syndrome

Simons Searchlight has helped us by having a lot of information. 

Paulina Ramos, mother of Isabella, a 7-year-old girl living with Bainbridge-Ropers syndrome


The responses below were originally written in Spanish and translated using a third party service.

What is your family like?

My family is filled with fighters. Despite the adversities, we are happy. There is always fear and worry but with love, faith, and patience we will get ahead.

Mi familia es muy luchadora, ah pesar de las adversidades, somos felices. Siempre está el miedo y la preocupación pero con amor, fe, y paciencia saldremos adelante.

What do you do for fun?

I like listening to music and going for walks. 

Me gusta la música y salir a pasear.

Tell us about the biggest hardship you face.

At this moment, my epilepsy and my periods of vomiting. 

En este momento mi epilepsia y mis periodos de vomito. 

What motivates you to participate in research? 

Learning more about this syndrome and being informed. 

El aprender más sobre este síndrome, y estar informados.

How do you feel you are helping Simons Searchlight learn more about rare genetic changes? 

Contributing to statistics to have an idea of ​​what this syndrome is like.

En base a estadísticas se puede tener una idea de cómo es este sindrome.

What is one question you wish researchers could answer about this genetic change?

If there is a possibility that some of the diseases can be cured.

Si, hay posibilidad de que algunas de las enfermedades se pueda curar.

What have you learned about your or your child’s genetic condition from other families?

We are not the only ones, and for the same reason understand why some things happen so we can be more prepared.

Que no es la única, por lo mismo entender porque suceden algunas cosas y estar más preparado.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

Much patience, much love.

Mucha paciencia, mucho amor.

How has Simons Searchlight served as a resource for you and your family?

Simons Searchlight has helped us by having a lot of information.

Mucho, tener información ayuda bastante.

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