Sharing the stories of parenting and advocacy in Guyana’s Down Syndrome Community

FOR parents, watching their child reach certain milestones can feel like a race against time. From their first steps to their first words, many parents feel as though it all happens too quickly. But what happens when your child has different developmental milestones, a unique way of learning, and a different perspective on the world—one that not everyone understands? That’s the reality for parents raising a child with Down syndrome.

As Guyana joins the rest of the world on Friday in celebrating World Down Syndrome Day under the theme “We Call on All Governments to Improve Our Support Systems,” Pepperpot Magazine sat down with three mothers of children with Down syndrome.

From forming support groups to breaking the stigma, these mothers are proving that having a child with Down syndrome, while challenging, is not as different as many people assume.
Like any child, their children experience milestones, difficult moments, happy memories, and strong family bonds—their journey is simply a bit different.

Understanding Development
For Azeena Baksh, the journey began with her son, Zachary Falconer, who was born with Down syndrome nearly eight years ago. Over the years, she has become a strong advocate, sharing her experiences and encouraging other parents to embrace their child’s unique developmental path.
“Zachary has Down syndrome. I would say he’s on the lower end of the spectrum,” she shared.

“I always tell people that kids with Down syndrome develop differently. Generally, for children on the spectrum, they all develop differently. We should never compare them. We should judge them as individuals because they all progress at their own pace.”

For Azeena, a major factor in Zachary’s progress has been the support he receives both at school and at home. She credits these support systems for helping him meet many of his milestones and allowing him to attend a mainstream school.

“Zachary is able to function in a mainstream environment. And I think that has a lot to do with the mechanisms that are in place—the support system at May’s school, at home, and within his surrounding environment,” she explained.

Among the many groups she is a part of, Azeena is the co-founder of Extra One GY, a support group for parents of children with Down syndrome and other special needs.
However, she acknowledges that not every parent is ready to share their story. “I’m part of several Down syndrome groups, both internationally and locally. And one of the things that resonated with me was parents posting that it’s okay if they’re not ready to talk about it,” she stated.

Many parents are still coming to terms with their child’s diagnosis, and Azeena believes it’s essential to give them the space and support their need. “We advocate in Extra One GY for parents to accept that their child has special needs and to take necessary actions. But at the same time, we understand that there are parents who are still trying to process it. We support them in their journey towards acceptance,” she added.

A Different Kind of Love
For Sandra Doris, raising a child with Down syndrome came with an initial period of uncertainty. She became Wayneright’s guardian when he was just a year old and didn’t immediately recognise his condition. “I took him in when he was a year and eight months old. He’s nine now. When I first saw him, I knew he needed care. But after a couple of days, I realised something was different about him,” she recalled.

It wasn’t until she took Wayneright to a doctor that she learned he had Down syndrome. “I told my mom that I wanted to take him to a doctor for an evaluation because I felt something was wrong. I wasn’t sure what it was. When I took him, they explained it to me. After that, I came to love him even more,” she said.

Though she initially worried about societal stigma, Sandra embraced Wayneright wholeheartedly. “When they told me, I thought about people I knew before and the stigma attached to it. But I wasn’t sad. In fact, his condition wasn’t immediately recognisable unless you really knew what to look for,” she said.

Like many children with Down syndrome, Wayneright required additional support, especially in speech development. Determined to help him, Sandra enrolled him in speech therapy. “Wayneright adapts to things quickly. He started talking when he was four, after I enrolled him in speech therapy,” she shared.

While raising Wayneright comes with challenges, Sandra describes him as smart, curious, and deeply passionate about music and technology. “He’s into technology. What you don’t know, Wayneright knows. He’s very smart. He also loves music—he sings, beats the drum, and if his cousins are singing, he joins in,” she said.

The Changes in Down Syndrome Care
For Ann, raising her now 41-year-old son, Jilchrist, highlights how Down syndrome awareness and support have evolved over time. As a young mother at 18, she was not informed of her son’s condition until days after his birth. “From birth, I knew something was wrong, but I was only 18, so I didn’t have any experience. I asked the doctor if my baby was okay,” she recalled. “On the third day, I realised something was different. But they didn’t tell me right away. I started noticing that my baby wasn’t crying or moving much.”

As Jilchrist grew older, his condition became more apparent, leading to frequent hospital visits. “He was very sick as a baby. Many times, we thought he wouldn’t make it. The doctors told me he would grow out of it, but they never actually explained what was happening,” she said.

Although Ann had a strong support system at home, school was a different story. Bullying and stigma made it difficult for Jilchrist, leading Ann to eventually pull him out of school.
“Children used to beat him up, write on his shirt—just all kinds of things. One day, he didn’t come home when school was over. When I got there, I found him locked inside. That was the last day I sent him to school,” she shared.

The stories of Azeena, Sandra, and Ann highlight the importance of advocacy and community support for children with Down syndrome. While awareness has increased over the years, there is still work to be done in fostering inclusivity, providing resources, and ensuring that every child—regardless of ability—has the opportunity to thrive. For these mothers, their children are more than a diagnosis—they are sources of joy, love, and resilience. Through their experiences, they remind the world that acceptance and understanding can make all the difference.