Claudette Grant is near breaking point.

Her greatest wish, she confessed, is for her nine-year-old daughter, Hannahlisa Hall, to get over her illness and be well again.

In the last three years Hannahlisa has suffered four strokes, and the pain of seeing her daughter in this state has been made worse by the financial strain Grant faces to get medical treatment for her child.

“Every day my dream is for the sickness to just leave her and she come back normal,” Grant told the Jamaica Observer. “She was always happy. She would read and spell her words and try to do every little thing for herself before the strokes. Sometimes she would say she want to help mi fi wash and so on. Sometimes mi give her a little one something and she hold it with one hand, but the next one can’t go nowhere.”

Little Hannahlisa’s problems started in 2018 when she suffered a double stroke, a few years after being diagnosed with haemoglobin (Hb) SS sickle cell disease — the most common type of sickle cell disease, which occurs when a person inherits copies of the haemoglobin S gene from both parents.

The third stroke hit the child in 2019, and just last month she suffered the fourth.

“A God alone know how it painful at times. Sometimes mi waan cry, but sometimes it feel like mi cyan cry,” the distraught mother told the Sunday Observer.

According to Professor Jennifer Knight-Madden, director of the Caribbean Institute for Health Research’s Sickle Cell Unit at The University of the West Indies, Mona, sickle cell disease is very common in Jamaica. One out of every 150 babies born in the island have the disease, which can cause serious complications, such as stroke, because the disease impairs the lining of blood cells in different parts of the body, including the brain.

Whenever these blood cells become badly damaged and patients develop moyamoya — a rare condition in which the blood vessels that supply blood to the brain become narrowed — children are sometimes referred for surgery.

Professor Knight-Madden said when this occurs the Sickle Cell Unit will do an ultrasound on brain vessels to find evidence of blockage. They then try to put patients on hydroxyurea to help prevent another stroke. Some patients respond well to the drug, while others do not.

“Sickle cell is very common, so we encourage all Jamaicans to know what their status is and their partner’s status so they can make informed decisions. If you have a trait, ideally you wouldn’t want to have a partner who also has a trait unless you are willing to have a child with sickle cell disease,” Professor Knight-Madden explained.

“Stroke is not uncommon. By the time children with SS disease reach 15, approximately six per cent will have a stroke. Once you have one stroke, the chance of another one increases with each subsequent stroke. In places where there is sufficient blood supply, the approach is to use transfusion every four weeks to decrease the risk of stroke,” she added.

“Usually, if they present having the stroke, we would do a transfusion in the acute setting to try to decrease the chances of the stroke extending, but we don’t have the blood resources to do chronic transfusion. However, Jamaica is one of the places that has really pioneered the use of hydroxyurea, which is a medication used to decrease the severity of sickle cell symptoms. We have shown that while it is not as good as transfusion, it definitely can help to decrease the chances of stroke,” Professor Knight-Madden told the Sunday Observer.

The availability of treatment offers some amount of hope to Hannahlisa and her mother, but Grant is finding it difficult to buy medication, pay rent, and purchase food from the small salary she receives from a job she managed to secure just three weeks ago after going without employment for months.

“The medication cost like $6,000 for the month. Taxi charge me like $2,000 to get to the Sickle Cell Unit every month. The doctor has recommended her to do a magnetic resonance imaging because they want to do a test on her chest. When I check it out, they say it’s $68,000. Mi nuh have dem money deh at this present moment,” she told the Sunday Observer.

“Mi just wish wi coulda get some kind of treatment or something,” the mother said with tears in her eyes.

Anyone wishing to help can reach Grant at 876-589-1468.

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