Six years of sleepless nights

FOR Shakira Warmington, raising a child with rare genetic condition congenital hyperinsulinism has been an uphill battle peppered with sleepless nights, financial strain, fights for a place in the country’s school system, and at times, questions of whether she has the strength to keep going. Her son, Ayoze Warmington, is just six years old with a condition that sees his pancreas making too much insulin, causing severe and dangerous drops in his blood sugar. His condition, she said, is so rare that he is the only child in Jamaica diagnosed with the disorder, which was confirmed by his medical doctor.

Shakira said her son became sick at six months old, experiencing seizures and what she described as minor strokes. However, she said it was not until he was one year old that doctors were able to identify the condition. Since then, Ayoze’s parents have had to reshape their lives around his health.

Shakira Warmington holds a glucose monitor she said she sometimes uses 10 times a day to check her son, Ayoze Warmington’s, blood sugar levels. “Having a child with a rare illness in Jamaica is very challenging for us. His care, medication, schooling — just being able to ensure that he has a normal life — it impacts my work, and we are not necessarily in a position where I can stay at home.

Both of us [her and Ayoze’s father] do our nine-to-fives and we both still have to do jobs on the side in order to maintain his health,” said Shakira, who is a teacher. She said maintaining Ayoze’s health comes at a steep cost, with the family spending approximately $100,000 or more monthly on his care, depending on his health status, while also taking care of their daughter and covering all other household expenses. Shakira said the situation had been a lot worse, as previously they had to pay $40,000 every two weeks to access the medication Ayoze needs.

However, thankfully, through the Ministry of Health’s Compassionate Care Fund that cost is now fully covered for six months, providing much-needed relief. But perhaps the most taxing associated challenge is the fact that Ayoze requires 24-hour care. His mother told thevJamaica Observer that she uses a glucose monitor at least three times a day when he is healthy, and up to 10 times daily when he is ill.

She said some days she has to stick him every hour, resulting in a lack of sleep that causes her hands to tremble due to exhaustio…