Carla's interview
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How did all start?
2 days after her first fever when she was 10 months of age, she was acting strange, no appetite, very sleepy, no mood to play and no fever anymore and we took her to the hospital where she had the fist seizure.
Do you already have a diagnosis? How long did it take you to get it?
It's FIRES. We had this Diagnose more or less after in the second week of the acute phase.
For what medical specialties have you been treated? What has been the most useful specialty for your?
neurology pediatrics try, metabolic, nutrition and rehabilitation
What has been the most useful thing for you so far?
the clinicians' help and understanding of our daughters' needs and the rehabilitation process.
What have been your biggest difficulties?
To control seizures and see progress in her development.
How has your social and family environment reacted? Have your social or family relationships changed?
All changed. It's not the case of changing because a child is born. It changed everything from social, economic, work, family, and private life.
What things have you stopped doing?
working, going out, go to the cinema, visiting friends, simply walking, doing activities all by myself, have time for myself... there are so many, that I can't even remember doing them.
What do you think about the future?
I´m afraid of it.
So far, which years have been the best years in your life? What have you done during them?
every single day before she went sick! I was the happiest person and I didn't even enjoy it at the most, because I didn´t know what was about to happen.
What would you like to do if you didn’t have your condition?
Being a teacher again. Having my normal life back.
If you had to describe your life in a sentence, what would it be?
It is like living in Hell caused by this F.I.R.E.S.
Finally, what advice would you give to a person in a similar situation?
Never take what people say for granted. Always look ahead. Search as much as you can to find solutions and other and different paths. Don't waste your time you are running out of it. Be confident in your own convictions as a mother or father. No one knows better our sons than we do. Have Faith and never give up.
