Tatiana Hinojosa is a well-known writer and teacher from Valledupar, Colombia. Tatiana went to grammar school with Leyla Mieles, an associate of Factor-H in Colombia, who introduced our mission to Tatiana, who quickly became aware of the need to increase knowledge about the disease in every level of Colombian society, as well as to tell the stories of the many children and young adults living in HD families across the region.
Education about the disease is a key aspect of our mission. Education at a social and institutional level. We have always been surprised by the fact that not many people know of the many families affected by Huntington’s disease in this area of Colombia. It became clear to her as well that she could give voice to the many stories of the lives of these children.
Tatiana then decided to interview the at-risk children and adolescents and to collate the stories into a book.
The book will be called ‘El estigma de la oruga’ (“The stigma of the caterpillar’), a title that has several meanings: the change from childhood to adulthood, the change in societal perspectives, the stigma associated with profound change, the ignorance in seeing the potential that the caterpillar contains to finally become a butterfly. She will explain this in due course in her own words.
For now, we agreed to publish some of the short stories as a blog in our website. The original versions in Spanish will be added soon.
The book will be illustrated and narrated by local artists, to facilitate access to individuals living in rural areas that might be unable to read. Our plans also include a strategy for dissemination of the book through local governments, schools and universities in the region.
Matt Rota is an illustrator who has recently become associated with our kids’ program at Factor-H. Below are some of the illustrations he created recently for some poems I wrote about the kids to commemorate the completion of the 5th year of the program in Colombia. What began as an attempt to help a few kids in San Angel, Colombia, grew to support 42 kids for 5 years and now 120 kids in Venezuela (now started our third year of support).
I woke up in the middle of the night during the Christmas holidays and wrote a few poems, which I shared with our friend and colleague Matt. I shared pics from the trips I took together with the children of Colombia, and he chose a few images to represent the work we have done, and the sentiments behind the program. Below are a couple of Matt’s illustrations and the poems, and below you can see a Youtube video with all of them.
You can see Matt’s amazing artwork here: https://www.mattrotasart.com
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