How a Baby with Down Syndrome from Brazil is Changing Lives in Zambia

As we move towards a season of thanks and of giving, I invited my friend Holly Nelson to tell the story of the Special Hope Network, a ministry that equips local families in Lusaka, Zambia, to care for their children with special needs. I’m so grateful for a small way to participate in the work Special Hope Network is doing to change lives in Zambia and help families and kids with special needs thrive across the globe. It all started with a baby with Down syndrome from Brazil who is now changing lives in Zambia. In Holly’s words:

A Baby with Down Syndrome from Brazil

I will not forget the day I was handed a bundle of blanket-wrapped-boy that was far too light. Boston. Logan airport. March 13, 1996. Me, handing the bundle back because I was sure this could not be the right boy, shockingly emaciated and nothing like the baby in the picture we had received and were expecting.

Looking back now, that was the day that Special Hope Network began as a glimmer in the furthest corners of my husband Eric’s and my thoughts. You see, this tiny, barely alive bundle’s name at the time was Rafael Junior Santos da Silva, and he was flown to us from Brazil, from an orphanage that wasn’t willing to take or keep children with special needs. Rafael had Down syndrome.

And though Brazilians are well-known for their respect and care for children, this orphan home did not feed Rafael and care for him like they would a typically developing child. They were slowly reducing his food and letting him die. We began the process of adoption, and that little boy is now a young man ministering to kids with intellectual disabilities in Zambia alongside his twin sisters who also have Down syndrome, Maggie and Mollie, and my husband Eric and me.   

Moving to Zambia

Having grown up in the United States at the end of the twentieth century, I hadn’t realized that there are places in the world that don’t know how to care for children with intellectual disabilities. We spent our days driving our kids to OT, PT, SLP, swim lessons, Special Olympics, and every type of medical appointment you can imagine, including three catheterizations and open-heart surgeries in Boston. But as we neared the end of the first decade of the 2000s, we realized, in the words of my husband, Eric,

“The world’s greatest orphan crisis is happening, which means kids with special needs are most likely suffering even more than typically developing kids. I think we are living on the wrong continent!”

Eric flew to check out what was being provided to kids with intellectual disabilities in countries where the HIV/ AIDS epidemic was at its worst, and found each place he visited needing more help than the last.  

Special Hope Network in Zambia

From May 2010 until the present, Special Hope Network has been on the ground in Lusaka, Zambia. We have worked to set up Community Care Centers in densely populated areas. At these CCCs, parents are trained in every aspect of their child’s development, as well as what their child’s disability is, what it is not, and what they can do to care for whatever medical issues the child has. As of today, we have 436 children with intellectual disabilities and a matching number of caregivers (usually a mom, auntie, or big sister) attending sessions weekly.  

We employ over 50 staff trained to work with children and their caregiver at our Centers. We equip churches and Pastors who are working toward a certificate to be a ‘welcoming community’ for children with special needs. We invite traditional healers to learn about disability, since they are usually the first place a family takes their child when they begin to develop differently. We offer resources to schools who are encouraging us to come train their teachers so they can keep current students and accept new kids with special needs.  

Sam’s Ministry

And it all started with Rafael, a 13-month old boy with Down syndrome from rural Brazil who weighed 10.2 lbs, and who by God’s grace ‘found’ us and became Samuel Rafael. Sam now has a fan club everywhere he goes. He remembers people’s names, the compound where they live, their birthday, and often their family members’ names. He reminds people of their importance and value with his great memory and constant interpersonal interaction. He studies his Bible and prepares to teach Bible study or preach alongside Eric, his Dad. 

Sam is incredibly helpful and does household jobs willingly and even joyfully (even the repetitive jobs others get tired of, like putting dishes away). Most people we know love to have Sam around. When we go to churches to speak about including people who have intellectual disabilities, Sam, Maggie, and Mollie go along with us, and Sam often convinces the Pastor and congregation that adding people with special needs would be the best decision they could make. His ministry of interacting with people is an integral part of our work here.

How You Can Participate

Many of you who are reading this may be American moms of children with Down syndrome or other special needs. The scope of need in Zambia can be overwhelming, and if you are already spending yourself on behalf of your child with a disability, a whole other country’s broken system is certainly too much to take on. But when many of us join together, the load becomes so much lighter.

I’m writing today to share our story but also to invite you to sponsor a family for $50 each month. You can support another mom of a child with special needs in Zambia so that she can learn and grow as an advocate for her child. Amy Julia and her husband, Peter, financially support Special Hope Network and in that way, are advocating for many, many parents and children. We hope and pray that you will want to join them, and us, in this enormous endeavor.

When I was handed that incredibly malnourished, sick and tiny Rafael, I thought about handing him back, but I didn’t. Similarly, we hope you don’t hand back this opportunity to support a parent advocate and increase the understanding and inclusion of a child with special needs into Zambian society. Your love, your advocacy, and your assurance in the value of the vulnerable can extend to families the world over.

baby with down syndrome changes lives in zambia

Thank you for reading and considering your participation with Special Hope Network.

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Hi, I’m Amy Julia.

I write about faith, family, disability, and privilege.

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