Patience, education, ...

to a place where I can enjoy life a little more,” she shared.

Declan needs to do surgery before he is 10 years old, or there’s a strong possibility that he will lose his life. The family is currently waiting on the Georgetown Public Hospital Corporation which is expected to facilitate the surgery. Even if the surgery is done, though,

Nadia must still live with the reality of Declan’s life expectancy.

“I’ve learned to accept the fact that a child with Down syndrome life expectancy is probably 30, 40 or less. Even though some days you cry, you still have to try your best and see what you can do to help your child. I pray and ask for a miracle,” she expressed.

So far, she’s found that speaking with other parents helps her to cope with the stress of it all. As for dealing with the stigma attached to children with Down syndrome, Nadia said she doesn’t allow this to bother her anymore. “People tend to look at the child differently. Sometimes you’re in certain places and you’re wondering if you should be there. Now I don’t let that bother me because my child has to live like any other child with special needs.”

Unique Personalities

Reeza Reasha Morgan is an Occupational Therapist at the Ptolemy Reid Rehabilitation Centre. She gets to work with individuals with Down syndrome to improve their participation and independence in everyday activities.

In light of World Down Syndrome Day 2023, she shared some pointers that can help the general public when dealing with persons with Down syndrome. “They should be shown the same respect as everyone else,” she commented, adding, “Refer to them as a person with Down syndrome or a person with Down syndrome. Do not use ‘suffer from’, ‘a victim of’ or ‘afflicted by’ Down syndrome to address them.”

She continued: “Use plain language and always speak directly to a person with Down syndrome and be sure to give them time to respond. They are very unique with their personalities, strengths and support needs.”

Meanwhile, Reeza explained that Down syndrome, also referred to as Trisomy 21, is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of Chromosome 21. Chromosomes are small packages of genes in the body that determine how a baby’s body forms and functions as it grows during pregnancy and after birth.

Children with Down syndrome have mild cognitive impairments (short attention span, problems thinking and learning), delayed speech, delayed language and delayed short-term memory. This year’s theme is, “With Us For Us” and the main focus is on a human rights-based approach to disability -- the right to be treated fairly and have the same opportunities as everyone else and the freedom for people to make their own choices.

Photos: Down 1: Down 2: Down 3: Down 4: Four-year-old Declan Munro Down 5: Two-year-old Caleb Quail