Smiling through the pain - Single dad raising two daughters living with sickle cell disease

Today is celebrated as Sickle Cell Awareness Day, a disease which affects 10 per cent of Jamaicans.

According to The Sickle Cell Support Foundation of Jamaica, sickle cell disease is a hereditary blood disorder caused by an abnormality which affects red blood cells.

Hugh Blair is the father of two teenage daughters living with the disease and admits it is difficult, but he is determined to do whatever is necessary to keep his girls going.

Blair recalls how shocking it was to find out that their first child had the disease. He had knowledge of his sickle cell trait, however, his wife was not aware of hers.

The girls are 16 and 18, and were diagnosed about three months after birth.

After diagnosis, the sickle cell unit followed through with monthly visits and this continued up to when they each turned five years old.

Both girls underwent surgery to remove their spleens, an organ involved in the production and removal of blood cells.

With age and their body's response to treatment, hospital visits have been reduced to one or two visits per year except in cases of extreme pain.

Because of the pain associated with sickle cell, his daughters are unable to be as involved in physical activities such as swimming and playing netball as they would love to.

But education remains fundamental.

"Their attendance at school is predominantly fine, just when they have pain and have to be hospitalised," said Blair.

He is thankful that his older daughter, who has been diagnosed with chronic pain since 2014, did not have to be hospitalised during the exam period. She has eight CXC subjects to her name.

PASSED AWAY

Though Blair's wife passed away four years ago, he is not short on support.

His sister assists with taking his daughters to appointments and picking them up from school.

Their school is also supportive and the guidance counsellors visit them when they are hospitalised.

Blair utilises a subsidised clinic at the University of the West Indies, but has to pay the full cost for hospital fees, medication, and blood tests on occasions when his daughters are hospitalised.

Blair, a telephone cable technician, said his job is not affected, even though as the primary guardian for the children, he responds to their every beckon and cry for pain.

"I am able to work through that ... where I am, they are understanding," said Blair.

He said sickle cell is a disease filled with quite a number of uncertainties.

"You have to be open to what can happen and condition your mind to stay the night in the hospital," Blair said.

The Blairs have joined a sickle cell support group and the meetings have been beneficial.