Little Amari John’s illness is so rare that he is believed to be the only patient being treated for it in Trinidad and Tobago and probably the entire Caribbean. He has had bouts of bleeding, recurrent infections and developed skin conditions, all before his second birthday.
Days after Amari’s birth, his parents Racheal Seales and Abiel John realised their little boy was developing sores on his skin. However, alarm bells really went off when the newborn started passing blood. After several tests and medical examinations were conducted, the diagnosis would leave both doctors and parents in shock.
Little Amari was diagnosed with Wiskott Aldrich Syndrome, a very rare disease that causes immunological deficiency and a reduced ability of the body to form blood clots. His condition is so uncommon that doctors here believe he is the only patient in the country at this time to be battling against it.
Amari’s condition hasn’t held him back, however. At just 22-months-old, he already knows how to time his steps to the Cha Cha slide. But his journey filled with stomps and hops has been nothing less than a miracle, according to his mother.
“He’s diagnosed with Wiskott Aldrich syndrome. He’s believed to be the only child in Trinidad to be diagnosed with it, it is almost one in a million, that is why we call him our one in a million baby,” Seales told Guardian Media yesterday.
The recessive disease is characterised by eczema, low platelet count, immune deficiency and bloody diarrhoea, all of which the infant endures.
He spends every waking second with a protective headgear on. That’s because the slightest fall or knock without it could result in his parents’ worst nightmare, as it could mean death for little Amari.
Little Amari John has to constantly wear protective clothing to ensure he doesn't get cuts or bruises due to his condition.
COURTESY RACHAEL SEALES
“Platelets are responsible for clotting your blood. Because his is so low, he can bleed very easily so we have to protect his head. If he falls and hits his head, he can bleed out in his brain like that,” Seales explained
Since his birth, Amari has left the hearts of his parents skipping beats. The prospect of him enduring gut-wrenching pain is already enough that they are willing to move mountains to get him the help he needs. Even with COVID-19 affecting their ability to raise funds, they are not deterred.
“Bone marrow transplants are very expensive, it ranges from the severity of the case, the cost can reach as much as TT 7 million dollars, the final quote we got from this hospital now is 277,000 Euros (appox TT$2.5m). We have been trying fundraisers, but it has been difficult as COVID-19 has many people under pressure,” Seales lamented.
The parents said they have received support from the Children’s Life Fund but they were still well short in their bid to get Amari the bone marrow procedure he desperately needs.
As little Amari continues to win the hearts of family, friends and doctors, his parents are fighting to take his pain away. According to John, his son has inspired everyone with his resilience and love for life. Anyone wishing to assist the family can contact them at 351-8838 or make contributions to the Amari John appeal fund at Republic bank, AC# 180037564331.
