'Truly a fighter'

6-year-old with sickle cell living her best life

Sunday, June 24, 2018

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YOU could never tell by looking at the brilliant smile of six-year-old Kendra Notice that she has been constantly in and out of hospitals since she was three months old.

Diagnosed with the debilitating sickle cell disease, Kendra spends weeks at a time in hospital beds, hooked up to IV lines for the medication and fluids she needs to survive.

Her mother, Donnasha Leslie, was devastated on hearing the diagnosis.

“The doctors called me one day requesting that I come in with her for a test, and afterwards when I was told that she had the disease I felt so bad,” said Leslie.

With both parents possessing the sickle cell trait, there was a 25 per cent chance that Kendra would have got the disease.

Sickle cell is a genetic disease in which the normal round shape of red blood cells become like crescent moons and interconnect, as they cannot move easily through the blood vessels, which results in blood clots. This can lead to individuals with the disease experiencing severe pain throughout the body, swelling of hands and feet, and the most common signs and symptoms linked to anaemia: Feeling tired or weak, shortness of breath, dizziness, and headaches.

Approximately FIVE per cent of the world's population carry gene traits of the disease. Here in Jamaica it is reported that one in every 150 babies is affected by sickle cell. In 2015, when the National Health Fund (NHF) announced that sickle cell would be added to the list of chronic illnesses covered by the fund under its Individual Benefits Programme, many Jamaicans, including Leslie, felt as if a weight had been lifted off their shoulders.

Currently, with the NHF card, she spends a little over $1,300 a month for medication, which would usually cost her up to, or in excess of, $2,000.

“When I go to the pharmacy with the NHF card it gives me a chance to pay a lesser amount, and I can put the money that I save towards other things. It is a good thing that the NHF is doing for anyone who is impacted by this disease,” said Leslie.

As at March 31 of this year, the NHF had 1,567 people enrolled with sickle cell disease and subsidies paid out to date amount to $1.826 million, with 113 Jamaicans making almost 800 claims in the last financial year for the prescribed medications.

Due to Kendra's fragile immune system, Leslie is always on alert for environmental factors which could trigger the disease and is very careful to keep her daughter away from other children who are ill at school. This does not stop Kendra from having lots of friends and being the playful child that she is.

Kendra's goal is to become a doctor and to care for others in the way her doctors have done for her.

“She does not seek pity at all; sometimes the nurses have to ask if she is sick. My daughter is truly a fighter,” said Leslie.

There is no cure for the disease. However, it is recommended that sickle cell patients drink lots of fluids to stay hydrated, take rest breaks while being physically active, and try to maintain a healthy lifestyle overall.

This article was contributed by the National Health Fund, which is aimed at providing funding for specified health care benefits, health promotion, health projects, and pharmacy services in a sustainable, efficient and customer-centric environment.

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