Born too soon for science

Soldados de Ainara supports research into Cach syndrome

Ainara, Tito and Alex's families fight to improve the quality of life of their children who are suffering from Cach Syndrome and they work to obtain funding to promote research into this rare disease. The Soldados de Ainara association also offers support to other families who find themselves in the same situation.

Soldados de Ainara supports research into Cach syndrome Soldados de Ainara supports research into Cach syndrome

There are approximately 150 cases of Cach Syndrome worldwide. There is no cure or treatment for this rare disease. For those suffering from this disease the loss of white matter in their brain prevents them from walking and being able to move and as the disease progresses their symptoms worsen.

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Ainara Reina was born in 2009 in Murcia and began walking and speaking at an early age. However, from the age of three, Ainara became clumsier and found it more and more difficult to get around. Until she received her diagnosis. Tito and Alex's cases are different. They are from a different place, are different ages, but they all have one thing in common: all of them suffer from Cach Syndrome.

The lives of families with children affected by this syndrome change immensely after getting this diagnosis. From the moment they are informed that their children have a syndrome that has no cure, they fight to fully understand and deal with the disease. Their goal is to raise funds for research, to support the search for new therapeutic alternatives and to help other families who are in the same situation.