Hoping for a miracle

A St Ann couple is grappling with the conundrum of a biological jinx that has rendered their three young children unable to walk or talk. The condition has apparently caused the children – aged three to eight – to be underweight and has badly deformed their limbs – particularly the feet. Though being able to move their hands and feet erratically, they have no sense of balance and communicate only by making sounds or pointing. The family of five lives in the rustic community of Roadside, a sparsely populated hamlet tucked away amid swathes of wood and pasture, some 19 kilometres (12 miles) west of Moneague. The parents, who requested that their names not be published because of a fear of prejudice and misunderstanding, said the road to self-disclosure has been long and hard, riddled with episodes of grief and devastation. To preserve the parents’ privacy, we refer to them here as Patricia and Carlton, but they assented to disclosure of their children’s identities. Tests to determine the cause of the mobility and speech defects have all come up inconclusive, as an initial Bustamante Hospital diagnosis of cerebral palsy in the first child, daughter Cadaisha, was eventually discounted as similar symptoms surfaced later in the other two siblings, brothers David and Dishon. “An MRI (magnetic resonance imaging) on the brain was OK. The specialist (brain surgeon) was speculating. She was looking for something in the brain to work with but she didn’t find anything.  “We did many tests, but everything came back negative,” said the stay-at-home mom. Reference after reference led them on an endless hunt – from traditional medicine to naturopathy – for an answer which to this day has eluded them. They said a neurologist has recommended that further tests be conducted in the United States to conclude whether the condition has genetic roots, a credible consideration because of the similarity of developmental deficiencies and periods when the symptoms became evident. The last estimated cost of those tests was around US$60,000, the family said,a projection which was made as far back as 2006. But financial woes have curtailed their search for answers – and for a cure – as Carlton, a forklift operator, is the sole breadwinner. For now, they have had to sacrifice the greater goal to satisfy the more immediate needs of survival. “We’re drained because he is the only one working. That’s the reason we didn’t continue the investigation. It cost us every time we going in to Kingston, because we had to charter something, and pay for someone to babysit the others, plus we have to pay the neurologist, so it’s very, very hard,” Patricia, who harbours hopes of publishing a book about their experience, told The Gleaner.