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 exhaustion.

Shakira Warmington points to the bed on which her son Ayoze Warmington sleeps, appealing for assistance to make him a customised bed that is low enough to prevent injury during seizures.

“Because he gets ill so often I have to be the one to take care of him, ensure that he’s fed correctly and he’s fed on time, because of the weight issues. He throws up a lot and so eating has to be calculated, otherwise he throws it all up — and that, too, affects the weight. He will lose five pounds in a week just like that. He will be healthy this week; next week, he’s not eating. And when he doesn’t eat, the sugar goes down, and the sugar levels have gone into the negatives sometimes,” she told thevSunday Observer.

“I am mother, counsellor, and nurse. Over the six-year period it has impacted my nerves. I shake because you have to watch him while he sleeps. He has to be fed in his sleep because, naturally, the sugars in our bodies go low while we sleep, and his are already going low so it means while he sleeps it is a high possibility that he dies in his sleep, so he has to be fed,” she said, her hands shaking as she spoke.

“We have to feed him using a syringe while he sleeps because he doesn’t want food, he wants sleep; but whether he wants it or not, he has to get it because you have to keep pumping his body with the food. There was a time when he was being fed every hour, and I’m the one feeding him every hour, so it means I’m not sleeping. I have to feed him throughout the night; I still have to wake up to go to work, function throughout the work[day], get things going, doing it all over again — and that is if he’s healthy enough,” she added.

She said the suggestion was made for her to purchase a Dexcom machine to monitor his glucose levels, but that is an extra cost they cannot afford, so she became the machine.

Beyond the home, Shakira said challenges also exist with regard to Ayoze’s access to education. She said after he completed basic school she struggled to find a primary school that would take him. She said Ayoze was rejected by 15 schools, which said they did not have the resources to facilitate him.

Thankfully, he has now been enrolled in a private school to start in September — another expense for the family. A shadow has also been approved by the Ministry of Education for her son but because the stipend for shadows is low, they had to promise the shadow more money to make the job more attractive.

Shakira also believes her son needs to be assessed for learning and psychological challenges, but after applying for the assessment to be done she said they were number 200 in line. The mother has also tried to get him registered with the Jamaica Council for Persons with Disabilities, so as to access benefits on offer, but experienced challenges.

“I can tell you that dealing with special needs in Jamaica, it edges you into insanity. I’ve gone through many stages of depression because it’s like every day I’m questioning, ‘How will I?’ There’s just always a list, and much of life is taken up by him. I don’t have a social life. I feel so alone. It really is just my family here — me, him, my daughter, his daddy, and our family.

“I’ve gone through stages of feeling as though maybe I didn’t do something as a mother, or my body didn’t do something. It takes that effect on you mentally as a parent and makes you say, ‘Oh, maybe I wasn’t enough,’ or ‘I didn’t produce enough of something, and that’s why he became ill,’ ” said Shakira.

“I have had to deal with that, telling myself that it’s not my fault, or it’s nobody’s fault why my own child is ill. It feels like we are well-rooted, good, upstanding citizens doing what we should do in our community, and when we seek to get help for our sick child, it’s hard,” a visibly exhausted Shakira told the Sunday Observer.

She said the option was presented for Ayoze to undergo surgery to remove his pancreas, but that is a cost she and his father cannot afford. She noted that the surgery is not a cure, because he would become diabetic, and she is not sure the family will be able to manage that.

Defeated, Shakira asked for help to provide her son with the best level of comfort and care. She said he currently sleeps on a mattress on the floor because she fears he will fall to the ground and hurt himself while having a seizure. She asked for assistance to get him a customised bed, install a railing in the bathroom for him to use, and financial assistance to help the family maintain his care

“I want a big bed that is comfy,” said young Ayoze.

He said he loves when his mother takes care of him but he does not like being sick because it makes him feel sad.

“I want to get better because if I get better I will be happy,” he told the Sunday Observer.

Highlighting the challenges parents often experience trying to advocate for their children, Shakira said more needs to be done to assist families with children who have special needs.

“Find out more from parents. Gather us parents who have varying challenges and various children with types of special needs and find out what our daily life looks like and how, as a government, you can put in place policies that help to keep those of us with children or family members with disabilities to have some sustainable ways to gain assistance or gain support for our children,” she appealed.

“Where a nine-to-five job is concerned, there have to be some policies and policy changes that will impact us as parents dealing with children with special needs. You have your workplace policy, but if I have a situation that impacts how I can produce or how I can function, is it that the only option for me should be that I don’t work? If I don’t work, how will I feed my family? We need to see what can be done to allow us to be able to work but also take care of and manage our children with special needs without taking on the high possibility that we either drop down at work or drop down at home,” added Shakira.