"When we go as a team we are stronger". Leo says this when he talks about his console games with his brother, but this strength of unity could be extrapolated to the people around him: his family and friends. Leo is 6 years old and like any little boy at that age he exudes energy and vitality. Extrovert, cheerful, affectionate and restless, he likes to paint, go to the park, to the swimming pool, play chess, do judo... In short, he likes to enjoy childhood, like any other child. But Leo is special and has been living with a rare disease since he was born, which has made the hospital his second home.

Leo suffers from Fanconi's Anaemia, a rare genetic disease that causes bone marrow failure, increased susceptibility to solid tumours, leukaemia, and a life expectancy of 30 years. In addition, Neftalí and Michel's son - a colleague in the Software Solutions area of Izertis - is a carrier of the most complex variant: he has the Fanconi D1/BRCA2 subtype, making him the only child in Spain with this variant, which also reduces his life expectancy to between 10 and 14 years. The little boy was born with hypoplasia of the thumbs, suffered a cerebral thrombus two weeks after birth, has already suffered from kidney cancer and has undergone numerous operations. Every day is a challenge. And he faces every challenge with a smile on his face. Because Leo is cheerful and his illness does not undermine his desire to be one of the others, at home, at school or in the park.

It occurred to me to see if there was a foundation, anything that could give us that encouragement, that hope

In an attempt to learn more about his disease and to find out about other similar cases in Spain, Leo's parents joined the Fundación Anemia de Fanconi:. "It occurred to me to see if there was a foundation, if there was a family group or anything that could give us that encouragement, that hope," explains Neftalí.  She is already a member of the association's board of trustees, which promotes research projects on Leo's disease, which she is part of. Because his parents are aware that the little boy's blood can open many doors to the future, to his future and to the future of other children who may suffer from this ailment.

Meanwhile, they 'fight' as best they can and Neftalí is immersed in a process of in vitro fertilisation with pre-implantation genetic diagnosis, with the aim of having a healthy, bone marrow compatible baby with Leo. He has already used up two of the six attempts he has been granted and will go for a third in August. A new search to give Leo hope.

Awareness and visibility

There is a world of hope and caring people

Alongside this fight with research, and after finishing the chemotherapy process for Leo's kidney cancer, Neftalí decided to give visibility to this rare disease and created the Instagram account @los_mundos_de_leo. A corner to raise awareness because "it is more difficult to empathise because their disability is caused by a rare blood disease, which is not visible to the naked eye". Michel nods and adds that networks are "a very good window for them to visualise themselves in these kinds of cases. Because even if it affects a few, it does not mean that they are less important.  Even so, they feel supported and accompanied on this difficult journey with Leo: "There is a world of hope and caring people. From people who are willing to help. And the truth is that it's pure love. 

And that window opened by the family to make Leo's case known and to be able to help many other people, has led them to participate in another initiative of the International University of La Rioja: to participate in the story competition 'Premios Supercuidadores'. These awards have been held annually since 2,015 and recognise the work of those people who dedicate their lives to improving the quality of life of people who, like Leo, suffer from some kind of illness or who are in a situation of Disability and/or Dependency. 

If you want to learn more about Leo's story and contribute your bit, click on this link and like:  Relatos Supercuidadores. Each vote adds up and brings Leo, Neftalí and Michel and the whole family closer to finding a place in the final of a contest with which they are only looking for a triumph of hope. To give the best possible life to the little one who smiles at life every day. 

Because, as his story concludes: As long as there is life, there is struggle. And as long as there is love, there is a future.