Hi Warriors!! It's my 5th birthday very soon and I can't think of a better way to celebrate it than sharing with you all the incredible achievements we have accomplished together over the years. As I tend to talk a lot, I'll leave you a brief summary in the paragraph below for those of you [...]
Author: Superninac
Learning to eat when you live with GSD
Hello Warriors! Long time! Since I'm a little better and have more "social life" the blog is a little abandoned, but I'm sure you understand... and we see each other frequently in social networks anyway 😊 Some time ago I told you how intense and risky my life was before I met Dr. Derks and before I went to The Netherlands to follow an experimental treatment for GSD type [...]
My adventures to get the GSD1b empagliflozin off-label treatment with wonderful Dr Derks
Hello Warriors! Ready for a new adventure? Fasten your seatbelts because todays' story is a very special, intense and also a loooong one... 🙂 I just wanted to be sure I could share everything with you guys and I know you appreciate getting the details. In my last entry in the blog One day in Nina's [...]
One day in Nina’s life (before meeting Dr. Derks) :)
Hello Warriors! Following two huge victories in my particular battle in The Netherlands at the University Medical Center of Groningen and in the second epic edition of the "Battle of los Alamos" I cannot stop celebrating our achievments both with Dr. Derks and his team in the Hospital and with all my Warriors In Action [...]
52,495 USD raised in a year…. And increasing!
Hello Warriors! Let me start by apologizing for being silent for so long in my blog. We have had some hard times and we had to move from Granada to Malaga to change hospitals so we could only give you quick updates through our social networks. By the way, let me also thank you for [...]
Warriors In Action: Flamenco Craziness
Hello Warriors! As you know, last February 9th we celebrated the “Nina the Warrior” Flamenco party in which many warriors joined their solidarity with the passion they feel for Flamenco to support our cause and continue raising funds for GSD 1b research. The Cultural Association “Locura Flamenca” organized this super party with the performances of PA [...]
Warriors in Action: Little Big Human Beings (II) There’s hope!
Hello Warriors! You may remember that a few months after getting the GSD 1b diagnosis I told you about some "Little big human beings" who started supporting our cause. Lately, I am very happy because I am making a lot of new friends and more and more kiddos are becoming Warriors In Action and making our [...]
Trilogy of a Happy Birthday – Episode III: The Warriors’ Assembly
Hello Warriors, We finally get to the final episode of the trilogy in which I would like to describe my first Warriors’ Assembly, my first International Conference on Glycogen Storage Disease (GSD) I was very much excited when I got to the Hotel hosting the Conference because I was meeting all those GSD Warriors and [...]
2018 review: Am I a lucky baby?
Am I a lucky baby? I have Glycogen Storage Disease, a very rare, serious and chronic disease that affects one person out of one hundred thousands. I have the GSD type 1b, which is even rarer and affects only one person out of one million. My body does not produce glucose, my immune system does [...]
Trilogy of a happy birthday- Episode II: meet Doctor Weinstein
Hello Warriors! Today I want to talk about one of the most special days in my life: the day I met Doctor Weinstein. October 11th, 2018 was already marked in our calendar as a very important date for my whole family. It was my first birthday! The truth is that I am very privileged and [...]