Uma Mera is 9 years old, she is a bit shy, and when she is big she wants to be a fashion designer.
In October of last year UMA arrived at the hospital on the edge of a diabetic coma, and was placed in intensive care.The doctors diagnosed with type 1 diabetes, an autoimmune and incurable disease.
"Life changed us all completely," says his mother Hirania Luzardo.Since then UMA lives with a digital grafted monitor in the skin to monitor its glucose levels, and insulin has to inject 6 to 8 times per day because your body does not produce any.
Little UMA will be the only delegate in Miami, and the youngest, who will attend the Congress of the Youth Foundation for the study of Diabetes (JDRF for its acronym in English) that will take place in Washington between July 13 and 15.Children will meet in front of Congress to tell them what it is like to live with type 1 diabetes, and to ask them to create funds to find a cure.But also Uma is the only Hispanic girl who will attend the event.
The shortage of Hispanics in the JDRF Congress is an indicator that although the Hispanic community is one of the most affected by type 1 diabetes, "people do nothing to change this reality," said Luzardo, andHe added that this is partly due "to the cultural stigma of Latinos to maintain problems at home."
"Chronic conditions and diseases people silence them for reasons of prejudices," said Luzardo, and said that immediately after the diagnosis of his daughter "he was very closed" and did not want to share his experience.But that he soon understood that exposing his case could help educate others about the disease.
Looking for information for his own case, Luzardo said he had detected "a great lack of information in Spanish about the disease."
"There is almost nothing in Spanish about type 1 diabetes. Diabetes educators do not speak Spanish, and in general there is very little support," said Luzardo,
"For a Hispanic family without resources that does not have how to access the information is terrible," he added.
One of the few voices in Spanish about type 1 diabetes is Mila Ferrer, who began a blog in 2011 to expose the experiences of his youngest son with the disease.His renowned blog "Jaime, my sweet warrior", provides support to families and urges them to educate themselves about diabetes.
The JDRF receives almost 3000 applications at the national level of children with type 1 diabetes, of which they choose 150 delegates.The Congress is carried out every two years in the Capitol.
