NGO launched to raise awareness about Down Syndrome in Guyana

Co-founders of Extra One GY, Han Granger-Gaskin and Azeena Baksh

Mothers Azeena Baksh and Han Granger-Gaskin are paving the way for more discussions on the topic of Down syndrome in Guyana with the launch of their non-governmental organisation, Extra One GY as the world observed World Down Syndrome Day 2022 on Monday.

The mothers, who both have kids with Down syndrome, also known as Down’s syndrome, are advocating for a society where not only kids but people with Down syndrome are given the same opportunities offered to the rest of society.

With this strong passion for equality for people with Down syndrome, Baksh and Granger-Gaskin decided to create their own Down Syndrome non-governmental organisation, Extra One Guyana.

Baksh told this publication in an interview that after many discussions with the co-founder of Extra One GY, Granger-Gaskin, they realised that there is much information out there on Down syndrome that could benefit persons with Down syndrome, but parents and carers are not made aware of the information. This is what prompted the mothers to materialise the organisation.

“What we recognise in discussion is that there are so many things out there that are happening that kids can benefit from, or parents should be made aware of. But that information is not made is not really out there, so we decide, as parents, it’s best if we start a Facebook page that allows for that information to flow, that we can connect with parents, so parents can connect with us to get that information, to be made aware, to get those children to be more involved,” Baksh explained.

She said that it is important for kids with Down syndrome to be in environments that are inclusive.

“It’s big. It’s really important for kids with Down syndrome to be in an inclusive environment. Having your child to be involved in mainstream school, mainstream workplace, have the same level of education, they learn a lot from kids, they learn a lot from adults and even the adults in workplace to be able to [have] equal opportunities as everyone else,” she said.

“We want to push that awareness. We want people to be made aware of what is Down syndrome, what is available out there for kids with Down syndrome,” Baksh added.

Granger explained that they discovered that a lot of parents and caregivers do not know what is available for kids with Down syndrome, because there is a lack of conversation in society on the topic, which puts a lot of pressure on the parents and caregivers.

“We found too that a lot of caregivers, parents of children with Down syndrome just don’t know what is available. They don’t know where to look. You can feel very isolated because having a child with special needs puts a lot of pressure on the caregivers. You can’t make the assumptions, they take more time,” she said.

She noted that Extra One GY fosters those kinds of conversations. It’s a place where persons can share their experiences that will benefit someone else.

“We did feel that it was important for other caregivers, for other family members to know that there is a forum where they can throw their concerns out, maybe have other people’s experiences, they can see what people have to deal with it, how to deal with it. And just to know what’s available. If you have anything that is bothering you or just wondering about, you have a forum where you can just through your questions or your concerns and someone will say why don’t you check this, or why don’t you try that or don’t worry. So, it’s completely open. It’s Extra One GY.”

Baksh and Granger-Gaskin are parents of children with Down syndrome and they are thankful for their bundles of joy and they want the same for other parents too.

“We want parents to be able to have those same experiences whether it is your child takes a little bit longer to walk, to speak. All it asks of us as a society is to be a little bit kinder and a little bit more patient with these kids, even as adults. Little more accepting and inclusive,” they said.

Extra One GY is a group of parents, siblings, caregivers, and friends of persons with Down syndrome whose purpose is to advocate for and promote acceptance of persons with Down syndrome; and support for the people around them.

World Down Syndrome Day 2022 is observed under the theme: “Inclusion Means,” which calls for persons with Down syndrome to be included in matters of life and not be discriminated against.

Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms and functions as it grows during pregnancy and after birth. Typically, a baby is born with 46 chromosomes. This extra chromosome in the body creates deformities, developmental delays, and other conditions.

Extra One GY can be found on Facebook at Extra One GY.