Doña Ruth, Mauricio and their daughter María Guadalupe

Today I’m introducing to you a new family from San José, Costa Rica. Doña, Mauricio and her daughter María Guadalupe, a beautiful family who inspires me so much.

Mauricio, 56 years, originally from Nicaragua, has huntington disease, a genetic, hereditary and neurodegenerative disorder.

It’s in 2018, that Mauricio was diagnosed positive from huntington and his family learned about it. In fact, he was ill long time before because the first symptoms appeared 7 years ago. But at that time, nobody understood what was going on.

He is from Nicaragua, they actually lost contact with his family and had no idea about medical history. But unfortunately the disease is here, destroying a new family, generation after generation again..

Mauricio is deeply affected, he can’t no more talk, read, write, barely walk and unable to do any daily activity.He has strong motor symptoms and uncontrollable movements permanently. Even at night, he can’t sleep because of those movements. Besides that he already got psychiatric symptoms and can behave abnormally.

Doña Ruth, his wife, is a very strong and courageous woman. She wakes up at 4 am every day to get to work because she’s working really far and has to get there by bus.She is accountant and has to work hard because since her husband is ill, the all family relies on her salary alone. Fortunately they found someone to take care of Mauricio while Doña is at work.

It’s very difficult for Doña because she’s alone to lead the family and she has to manage with her husband and daughter.She’s also dedicating her time to the Huntington Disease Association of Costa Rica.

The Cost Rica Fundation, provides support, educates families about the disease and shares experiences. They are very close to the families and it allows them to talk and listen over a coffee to everyone’s testimonies. They still have no information yet on HD research and need to exchange with other structures to share informations, advices and experiences. @fundacionfamiliahuntingtoncr

A warm thank you to these families who, beyond opening their doors, above all open their hearts to me, and that’s what touches me the most, thank you !

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