Donohue es una enfermedad rara dentro de las raras, que no tiene cura ni la tendrá en un futuro cercano.
Se trata de un desorden genético relacionado con la resistencia a la insulina, que en la vida diaria de los niños que la padecen genera multitud de complicaciones en el crecimiento y el desarrollo normal.
Donohue is a rare disease among the rare ones, which has no cure and will not have one in the near future.
It is a genetic disorder related to insulin resistance, which in the daily life of children suffering from insulin resistance leads to a multitude of complications in normal growth and development.
Maialen is the only case of Donohue in Europe, currently one of the 3 diagnosed in the world and one of the 50 recorded throughout history.
The problem is that the care is very expensive; we depend on a special diet, several hours of daily physical therapy and a multitude of specific care such as dermatologists or dentists, so getting to maintain her current quality of life is already a challenge.
In addition, Maialen's latest treatments are not giving the expected results, that is why we are striving to get LEPTINA, a hormone that in the United States is getting to lengthen the life expectancy of patients with similar conditions.
Therefore, all the money raised in the activities that we (family and friends) organize, will be used to finance all these expenses.
And that's why it's so important to sell a simple t-shirt or organize charity events.
Because every euro raised keeps us fighting and makes us feel closer to the goal of giving Maialen the best life we can, which is what she deserves, like any other child.
How can I help?