Pediatrician wants more inclusion and equity for children with Down syndrome

By Carlena Knight

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Yesterday, as the world stopped to observe World Down Syndrome Day, the head of the pediatric unit at Sir Lester Bird Medical Centre, Dr Shivon Belle-Jarvis, said much more could be done to s ensuring that affected children are not left behind.

Belle-Jarvis said while some progress has been made locally, “there is still a long way to go.”

“You know, we have just started and it only takes a few steps to start a great journey. We have a long way to go in terms of advocacy, to ensure that our children have equal opportunities and rights in education, extracurricular activities, even constant access to health care, because if, for example, a parent is in a situation of destitution, they may not bring their child for health care.

“So we’ve got a long way to go here in Antigua and Barbuda, but we’ve started and that’s the most important thing,” Belle-Jarvis said.

One such area that needs continued work, according to the doctor, is the stigma that surrounds the disease.

“It’s still common. I think maybe it’s kind of a nuance. People really like to watch if they see someone different and unfortunately people like to lump everyone into a slice of Down syndrome.

“So if you have a child who has a language delay or some other form of developmental delay, is autistic, is hyperactive, then everyone is lumped into Down syndrome, when they are so different and unique .

“So again, that’s where awareness raising and educational campaigns will make a difference,” she added.

On Sunday, the Pediatric Unit organized a fun bike ride to mark Monday’s international celebration, in conjunction with the Antigua and Barbuda Cycling Federation (ABCF).

The event saw children with the disease, their parents, hospital staff, cyclists and other supporters all dressed in brightly colored socks, riding around Pan Am Base Coolidge in a bid to raise awareness to Down syndrome.

The department also held a sports day last Thursday at the Police Recreation Grounds, which was attended by some of its young patients, as well as students from Adele School and the Victory Center.

Every year on March 21, Down Syndrome International invites everyone around the world to wear weird or vibrant socks in support of World Down Syndrome Day.

The date is the 21st day of the third month to signify the uniqueness of the 21st chromosome triplication that causes the disease.

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