Having our baby girl diagnosed with the ultra-rare, chronic and very serious disease, Glycogen Storage Disease type 1b, was the hardest thing we have ever experienced. Our whole world crumbled without even having the time to mourn: we needed to get hands-on help immediately since an error could be fatal for our daughter.

We were told that GSD 1b could be treated in our respective countries (Spain and Italy). However, our daughter's case was a very severe and complex one. We had to feed Nina every 40 minutes during the day and provide continuous feeding throughout the night to avoid severe hypoglycaemias. We also had a very long list of additional nursing tasks including daily shots. Despite strict monitoring, Nina went through several unpredictable, life threatening emergency situations.

We were exhausted but found the time and energy to devour GSD guidelines, to get in touch with the best experts in the world and to raise awareness and funds for research through Nina's website and Nina's social networks (#ninalaguerrera.org).

At a certain point, Nina's health deteriorated strongly. We had already found certain potential contacts abroad during our search and at that point we contacted MetabERN's Coordinator, Dr Maurizio Scarpa, in Italy. Dr Scarpa gave us the right guidance and confirmed that Dr Terry Derks, a member of MetabERN, was the most appropriate specialist to treat our baby. As soon as her status stabilised, Dr Derks, MetabERN network members led by Professor Scarpa, and the Italian Health authorities, did their best to get Nina referred to the University Medical Center in Groningen (UMCG). Thanks to the use of the Directive 2011/24/EU on patients' rights in cross-border healthcare, it was possible for Nina to be cared for by Dr. Derks and his team.

Doctor Terry Derks is a paediatric consultant on metabolic medicine and coordinator of the Center of Expertise for liver GSD in Groningen (the Netherlands). He represents our concept of the ideal doctor: excellent technical skills and expertise, combined with a deep sense of humanity, implementing the centrality of the patient approach at its best. At the core of Nina's story is amazing teamwork and an excellent example of how cross-border healthcare within the European Union works in practice. We are extremely thankful to all those who helped for their genuine efforts in ensuring the best possible treatment for Nina.

Today, we are back home and Nina is doing much better. Her blood sugars are more stable, her immune system has strengthened, her meals take place every three to four hours (with a little snack in between), her ability to eat has improved, etc. We had a beautiful experience at UMCG; we felt welcomed, understood and listened to. Nina even celebrated her second birthday there, learned some Dutch words and, on the top of that, we participated in a lecture for first-year medical students called "an interview with the patient".

We have no words to express our endless gratitude to every person and institution involved in this process. We can only say that thanks to them we are finally able to enjoy our daughter as a family and we have gone from feeling like Nina's caregivers to truly becoming Nina's parents.