‘Mommy, why do I have to get sick?’ - 7-y-o struggles with blood disorder

Earlene Johnson has had to watch her seven-year-old son, Kaffir McKenzie, struggle in pain ever since he was born.

Kaffir was born with beta thalassaemia major, also referred to as 'Cooley's anaemia', but was only diagnosed at age two.

This condition causes a reduction in red blood cells, and requires the infflicted to get blood transfusions every four to six weeks to sustain health.

The Yallahs, St Thomas, resident told THE STAR that she has to find almost $300,000 monthly for her son's medication.

"Kaffir takes a medication called deferasirox to counteract his iron toxicity, as a result of his numerous, life-saving blood transfusions. He is running dangerously low on his medication because of the high cost. The medication cost for Kaffir is $280,000 every 28 days! That is impossible for me to find," she said.

Johnson says financial burdens aside, her son's condition is a threat to her mental health.

"I am a clothes vendor ... it is very stressful but I personally try my very best to stay strong and my spouse is always here to support me mentally. He (Kaffir) contracted the dengue fever in December and paired with his regular condition, it has caused him to look like he's four months pregnant," she said, adding that her son suffers occasional seizures.

Currently, Kaffir's doctors are working assiduously to have him go overseas for a bone-marrow transplant.

"But the papers haven't been finalised as yet ... they (doctors) are currently seeking the hospital where he is going to do it," she said.

"On more than one occasion, Kaffir has asked me 'Mommy, why do I have to get sick ... why am I sick?' On each transfusion, his personality changes all together. This month's transfusion, he dances a lot. The next month, he sings a lot. The next month he is a genius and then next month he just doesn't care about anything," she said.

Now, she is seeking help from anyone who is able to assist her son.

"Kaffir is usually a happy, energetic seven-year-old. He is in grade two at White Horses Primary School. Though we are seeking help through the Compassionate Fund and the Ministry of Health, I am asking for your help in any way possible. It does not matter how small. Without this medication, Kaffir will start to go into organ failure," she said.

Anyone who is able to assist Johnson can call her at 876-332-1720. You can also make a donation to her NCB account, account number: 644423840.