Thousands of lights… lighting up my tunnel!

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Hello Warriors!

Yesterday it was a month I published my website so it is a great moment to provide you an update about everything we have achieved together.

You might remember what I said when I was describing the tunnel I am going through: there is light not only at the end of it but also inside it. The light outside gives me hope. The light inside keeps me alive and smiling. What if I told you that we have just installed 18500 colored bulbs inside the tunnel? What a lighting we have here!

We are celebrating that we have already raised 18.500 USD for the ongoing GSD 1b research at UCONN. More than 160 people have donated!

This is not all:

  • We have had 41260 visits to the website from more tan 170 countries and we have more tan 100 subscribers.
  • We have appeared in several media such as Diario Jaén, Andalucía información, Radio Alcalá, Onda Andalucía,, malasmadres’ blog, ABC, La Vanguardia…etc., etc. I must admit I was also called from T.V. but I still have not managed to arrange an appointment. You know, my agenda is full: pediatricians, digestive Doc, the metabolic consultation, the genetic one, the Physiotherapists, the blood tests, the Neurologists, the therapeutics, the emergencies, eating every two hours, getting the neupogen shot, measure the glucose level in blood….etc., etc., There is no way I can find some time to go to the hairdresser! The way my parents put it: I am beautiful no matter how I am dressed or combed and my smile will enlighten all screens 🙂
  • The W.I.A., the Warriors In Action, continue fighting battles which are bringing excellent results. I already told you about the embroiderer of dreams and very soon I will tell you about many other W.I.A: big little human beings, the ponderers, a village with a cinema, Nina’s bands, the Professor of professors and many more. Do you want to become a W.I.A.? Do not hesitate to launch your own initiative!
  • We have also collaborated with other initiatives. Do you remember that brave family who came up with the Charity Wine? It was an excellent idea and I give them all the credit! Many of us bought some of that wine so we also contributed to their cause against GSD.
  • We are encouraging people to become members of the Spanish Association for GSD patients and some of them are already in!
  • We have lost count on how many times the website and the blog’s posts have been shared in social media and, once more, we have received plenty of “Count on me” and so much love that we have charged our batteries for a good while.

In the hospital where I am currently staying I look through the window and dream of getting out and not coming back in a while… I feel your souls very close.

Thank you so much! Muchísimas gracias! Grazie Mille!! And thousands of NinaHugs!

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