October is Down syndrome awareness month. Each year, thousands of families around the world welcome a child with Down syndrome. Approximately 1 in every 700 births. In Paraguay, the prevalence is estimated at 22.35 per 10,000 inhabitants. While the condition is universal, the emotional journey that follows is deeply personal, often marked by fear, confusion, and questions that seem to have no answers. This is where Fundación Down Paraguay steps in.
“What will I do with a boy with Down syndrome?” wondered Gina, Elias’s mom. “Will people love her the same way?” asked Gisela, Alejandra ‘s mom, herself. “Will I be fit for it?” she added, voicing a fear that many parents share when faced with the unknown.
It is in these vulnerable first moments that Fundación Down Paraguay (Down foundation Paraguay) can be called upon; offering not only answers, but a lifeline. Later in this article, Gabriela Arca, the author of this story, shares her own thoughts about raising her 7-year-old daughter with Down syndrome, Annita.
The beginning of Fundación Down Paraguay
The foundation began in 2020, when two friends: Gina Monti and Cecilia Brusquetti joined forces and created a group that would answer these and many other questions for parents and caregivers of children with Down syndrome, advocate for their rights and raise awareness in Paraguay.
Down syndrome is a genetic condition caused by the presence of an extra chromosome 21, leading to developmental and intellectual delays. It is characterised by physical features like a flat facial profile, slanted eyes, and a single deep crease across the palm.
A family for families
Fundación Down Paraguay is much more than a nonprofit. It is a warm, personalised support network that accompanies families from the very beginning of their journey. From the moment they receive the diagnosis, and often, when their world feels like it is been turned upside down.
The foundation’s mission is clear: to be a constant, compassionate support for families of children with Down syndrome, providing reliable information, emotional support, and long-term guidance. Each new family is welcomed not as a client, but as a new member of a growing family. One built on love, solidarity, and mutual understanding.
Whether a family is seeking information, feeling lost, or simply needing someone who understands, Fundación Down Paraguay is there.
Core values that guide the work
What sustains this foundation is not just experience or expertise, but a deep set of values that guide every action. With hope, humanity, joy, love, commitment, and solidarity. With perseverance, constance, and commitment, the foundation has become a trusted partner for countless families navigating an often challenging system. It offers workshops, direct guidance, emotional containment, and – perhaps most importantly – the reassurance that no one is alone.
In collaboration with different professionals and parents, Fundación Down Paraguay has elaborated written guides for both parents and health care professionals in order to receive and provide information that is up-to-date and encouraging a more humane and respectful approach from the health care community.
A mother’s voice: Raising my daughter with Down syndrome in Paraguay
Gabriela Arca, the author of this article, is the mother of a 7-year-old girl with Down syndrome.
“Her name is Annita, and from the moment she came into my life, she made me not only a mom, but also an advocate, educator, makeshift therapist, and most of all, her fiercest defender.”
“Living this experience in Paraguay has been as beautiful, as it is challenging. Our country is making strides toward inclusion, but there is still a long road ahead. Social, educational, and medical barriers are still very real. Diagnoses often come loaded with stigma. Almost like a life sentence. We are expected to resign ourselves to a limited future for our children, when in reality, they need the same things all children need: love, opportunity, and someone who believes in them.”
Raising and fighting
“Raising a child with a disability in Paraguay means becoming an activist. Whether you want to or not. Because in every bureaucratic process, every medical visit, every school meeting, I have to remind the system that my daughter has rights. Rights that are often ignored, delayed, or denied.”
“But I am not alone. There are many families raising their voices for our children. We fight for truly inclusive education, for awareness campaigns, for a society where differences do not create fear, but curiosity and respect.”
“People sometimes ask me if it is hard. The answer is yes. But it is also beautiful. Being Annita’s mother has taught me to live with more tenderness, to celebrate every little milestone, and to treasure what truly matters.”
Choosing to love, choosing to believe
“Today, I no longer raise my child out of fear. I raise her with hope. With the belief that my daughter, like any other child, deserves a full and meaningful life. I do not set limits on her, because I know her potential has no limits. My job as her mother is to give her the tools, the love, and the freedom to become who she came here to be.”
“And my job as a Paraguayan citizen is to raise my voice. For Annita, and for every child with a disability. We are not asking for favours. We are demanding rights, we want respect, we want to belong.”
If you want to know more about Annita and her adventures in Paraguay, follow Annita on Instagram!
Help to keep this mission alive
Fundación Down Paraguay is a nonprofit sustained entirely by the generosity of its community. To continue offering this life-changing support to Paraguayan families, the foundation is calling for monthly donors who can help sustain its vital programs.
Your monthly contribution, no matter how small, can make a big difference. It helps keep this network of love and inclusion alive. Ensuring that no family has to face the journey alone, and that every child with Down syndrome is welcomed with dignity, joy, and a strong support system.
October is Down syndrome awareness month and the foundation encourages people to follow Annita and Fundación Down Paraguay on Instagram to learn more about not only Down syndrome, but also connect with this wonderful world an extra chromosome can give.
To make a monthly donation, contact the foundation by calling 0981 100 101, or email fundaciondownpy@gmail.com.
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