Nine years ago when Amani Mohamed entered this world she was a bouncing baby girl who was developing as per norm. However, months later those around her realised that something was wrong and following several doctors’ visits she was diagnosed with the rare condition Rett syndrome, which not only affected her speech but her general motor skills.
So rare is this condition that Amani is the only known child with it in Guyana. However, paediatrician Dr Mallika Mootoo, who has been supporting Amani and her family over the years, said there may be more children with the condition but because the symptoms are close to other conditions they may not have been diagnosed.
“I would not say that we have a lot of children with Rett syndrome because it is a very rare disease. But I wouldn’t be surprised if we have another one or two children who have just not been diagnosed… because it is so rare and because it overlaps with so many things,” Dr Mootoo explained.
