By Dr. Ignacio Munoz-Sanjuan | President & Founder, Factor-H
Huntington's Disease (HD) is a fatal disease that strikes individuals in their 30s or 40s. Kids born to an HD family experience death and disease very early in their lives. They have seen the effects of this disease in their parents, grandparents, and other relatives. In many instances, little kids have to care for one of their affected parents, as the disease makes them completely dependent. HD is excluseively genetic, and therefore each child born to an HD family has a 50% chance of developing the disease.
Living with an HD-affected individual or living with the knowledge - and fear- of developing HD in the family environment, generates unique and specific psycho-social and coexistence challenges for the little ones.
These kids are placed in a position of extreme of vulnerability due to the often-experienced violence, aggression, bullying, physical and mental abuse. In places like Barranquitas or San Luis, the two towns with the highest number of cases of HD in the world, and where the majority of families with HD live in extreme poverty, the situation becomes much more complex and dire.
Factor-H has dedicated a significant effort to the well-being of these families, and with a special emphasis in restoring childhoods. Through food assistance, through creating recreational opportunities, but most of all, thorugh providing educational opportunities. The "escuelitas/little schools" program was started to bring some of the kids to a level of basic education that enables them to return to the regular school-system. Most of the kids lived on the streets or with an affected parent, and did not know how to read or write. Recently, besides teaching them basic skills, we realized that we needed to do more, given the very specific circumstances these children experience.
Therefore, we expanded our objectives and decided to provide children with HD and/or at risk with permanent psychological care and guidance, involving their parents and/or guardians as part of our strategy. Factor-H recuited a child psychologist to be a permanent member of our staff in Venezuela to direct this new addition to the 'escuelitas/little schools' program.
In San Luis, the program has been operating regularly since November 2021 with two (2) consultation days per month, with an average monthly care of 8 to 9 children.
Potential beneficiaries are the boys and girls registered in our children's program, "Abrazos" ("Hugs") that serves eighty (80) children with HD or at risk from San Luis and neighboring areas and one hundred and eighty-five (185) from Barranquitas. The 'Abrazos' program has been in operation in Venezuela since 2018, and through this work, we provide basic assistance - food, clothes, school supplies, and periodic fun recreational activities, like celebrating Christmas together.
Also, we have identified twenty (20) adolescents who will be included in the Barranquitas Workshop School Program, four (4) of whom were already assisted by our psychologist at the beginning of the program. As kids get older, our goal with the psychological and workshop school programs is getting these children ready to become discerning, independent, mature youth who can escape the cycle of poverty and can face their future with the skills needed to succeed.
In addition, and through our work, we identify other children in the communities in dire conditions, and who are not at-risk for HD. These children are also included in order to extend the benefit to other sectors of the community.
We thank you each donor and each person that reads this and shares it with others.
Together we can help more kids live more fulfilling lives and regain hope in their future!
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By Bianca Moura | Executive Director
By Bianca Moura | Director
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