TélBenjaminBa nosotrosPAGSproyecto

          Benjamin was diagnosed at the age of three with a rare genetic disorder called Proteus Syndrome. Proteus syndrome is a rare condition characterized by overgrowth of the bones, skin, and other tissues. Organs and tissues affected by the disease grow out of proportion to the rest of the body. I learned that Benjamin (Marc) attended the only school in Pana serving children with special needs. Benjamin is unable to speak or walk and is transported to school with a special TukTuk driver.  When the driver is unavailable, he cannot attend school.  I was able to visit the school, Escuela Oficial Urbana Mixta de Educacion Especial (Mixed Urban Official School of Special Education), and immediately observed a group of dedicated people struggling to ensure these children received an education.  In my many conversations with Gladys, in Spanish, of course, I asked her what the most immediate need of kids and families like hers was.  She said “transportation”, and I said, “I can help with that”. And here we are; The Benjamin Bus Project, Incorporated, a 501(c)(3), dedicated to providing access for the special needs children of the Lake Atitlan region to education, specially designed activities that enhance their functioning in the community, and support for struggling families to adapt to the challenges of raising a child with special needs. We have an official partnership with “Asociacion de Padres y Amigos de Personas con Discapacidad Caminos de Esperanza” who is our on-the-ground team, a group of parents and friends of students and families at the school, who are a proven asset in accomplishing our goals.

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          As a Marriage and Family Therapist and a retired teacher, I am profoundly moved by the power of families to adapt, change and grow through adversity. This is so evident in these Maya families, living in poverty, working every day to earn enough to feed their families and educate their children which, at best, entails an equivalent of an 8th grade education.  Higher education, even high school, is rarely possible.  Add to that a child with special needs, from severe conditions like Benjamin’s to children with autism, downs syndrome, learning disabilities, physical handicaps, etc. These families lack the finances to pay for transportation to school nor do they have any training regarding parenting a child with special needs.

For children in the area with special needs, transportation to school can be impossible, due to distance to school, finances that prohibit paying for public transportation, inadequate accommodations in public buses and drivers who lack the knowledge of the needs of disabled children.

Getting these children to school, supporting their education and strengthening their families is the goal of the Benjamin Bus Project.

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Note: All documents related to our Guatemala partner are available upon request.