As if battling a rare illness was not enough for two-year-old Amari John, the infant now has another obstacle he must overcome, COVID-19.
Last December, Guardian Media captured John as he danced and spun to his favourite song, all while his health hung in the balance.
Up until then, his parents Rachael Seales and Abiel John described their boy as nothing short of a miracle.
Seven months ago, his parents made an impassioned plea for assistance to raise the funds needed to treat their son’s Wiskott-Aldrich syndrome, a disease so rare it is believed that he is the only person in the Caribbean diagnosed with it.
According to data obtained from an online library of medicine, people with Wiskott-Aldrich syndrome are also at a greater risk of developing autoimmune disorders, such as rheumatoid arthritis, vasculitis, or hemolytic anemia. These disorders occur when the immune system malfunctions and attacks the body’s own tissues and organs.
Without the bone marrow transplant, Amari continues to endure bleeding of the brain, recurrent infections and eczema or skin inflammation and swelling. It is why even before the pandemic arrived on our shores he had always been placed in a bubble and protective headgear.
But on Tuesday, another disease currently raging through the country dealt a blow to the infant’s already difficult battle.
“He got up yesterday (Tuesday) morning with fever and vomiting, so he cannot get these things because we do not know how it affects him. It could be very critical for him if he contracts this so yesterday it was really scary for me.”
Amari was rushed to the Dr Eric Williams Medical Sciences Complex and shortly after his arrival around 7:30 am several tests were conducted, one of which revealed the mother’s worst nightmare.
“All I could have done was cry. I know I had to be the strength for him but as I said you all never dealt with a child with this before. In between his up and down, I looked at him, he opened his eyes and he was just so spaced out and I was so scared and I told him keep fighting for mummy, we need to get you your transplant, we are so close.”
Rachael also tested COVID 19 positive and with a race against time on, both mother and son were rushed to the Couva Hospital and Multi Training Facility where they remain warded.
She indicated that her husband, who also exhibited flu-like symptoms was also tested but remained quarantined at home.
Speaking to Guardian Media while warded, Rachael said just last week the Children’s Life fund had approved TT$1 million to aid with his treatment at a hospital in Germany.
However, even as the pandemic wiped away hope for many, the family was still trying to raise the additional funds needed to cover post-surgery costs.
Rachael said she was now extremely concerned for Amari’s medical condition and whether or not it can worsen because of the COVID-19 infection. She remained bewildered as to how, despite their best efforts, the virus had infiltrated the family’s safety bubble.
“Between home, work, probably pharmacy or the grocery somewhere there we got caught. We never ever let our guard down when it comes to Amari, we know what one infection could do to him and as much as doctors assure me he will be alright, they have never dealt with a case like Amari’s.”
The zoom interview had to be cut abruptly after the infant began experiencing difficulties but Guardian Media understands that his condition has since improved.
According to information obtained from a medical journal, data suggests that children under the age of 18 years represent about 8.5 per cent of reported cases, with relatively few deaths compared to other age groups and usually mild disease.
However, cases of critical illness have been reported.
As with adults, pre-existing medical conditions have been suggested as a risk factor for severe disease and intensive care admission in children.