Portal de Murcia
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Councilor for Social Rights, Conchita Ruiz and Councilor for Education, Relations with Universities and Heritage, Rafael Gómez, have attended the presentation of the children's story "The Colors of Natalia" by the writer and journalist Mari Luz Bravo.
The City Council has participated in the edition of the book published by Palabras de Agua in Spanish and English, which will also be presented in Madrid and whose profits obtained by sales, will go to research the very rare disease of Niemann Pick C, suffering The youngest Murcia, Natalia Martínez Alarcón.
Diagnosed when it was very small after numerous medical tests, it has a genetic disease, which causes lipids and cholesterol to accumulate in the main vital organs such as the liver, spleen and lungs also reaching the brain, which causes them to accumulate in the Cells and mate them causing a neuro-degeneration that results in ataxia, convulsions and cataplejia.
The event was attended by the provincial mayor of Puente Tocinos, Enrique Carrillo, and the director of the Institute of Neurosciences of Alicante and professor, Salvador Martínez, who heads the investigation of the disease.
Source: Ayuntamiento de Murcia
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