Young Abdulla Al Bedwawi at the book promotion. Image Credit: Supplied

Abu Dhabi: Ahead of his first birthday, young Abdulla Al Bedwawi had been running a persistent fever.

The fever, which had started about a month earlier, showed no sign of dying down, and Noura Al Bedwawi was both worried and exhausted.

“I was already a mother to three boys when Abdulla was born, and pursuing a graduate degree. So there was enough on my plate when Abdulla took ill. We rushed from doctor to doctor, but his fever did not subside,” the 36-year-old mother told Gulf News.

Shocking diagnosis

Exhausted, Al Bedwawi asked her husband to take Baby Abdulla to yet another doctor, only to be informed about an unexpected diagnosis afterward. “When they returned home, my husband uttered one of the most shocking statements I had ever heard. ‘Your son is diabetic’, the doctor had said and I collapsed to the ground and began to cry. I simply could not believe it,” she remembered.

Al Bedwawi remained in this state for two days, even as she accompanied her son for his hospitalisation.

“Some of my husband’s nieces and nephews are diabetic. I had heard how they needed to use the washroom frequently, or felt lethargic when their blood sugar dropped. My youngest too had been refusing to be nursed at night and had been wetting twice the amount of diapers than usual. Yet, when he was diagnosed, I went into shock,” she said.

Initial hospitalisation

Abdulla was initially hospitalised to treat his diabetic ketoacidosis, a condition in which the body cannot produce enough insulin and ends up breaking down stored fats too quickly. This leads to a building of blood acids, or ketones, in the bloodstream. If this is not treated, it can lead to a coma or even death.

After Abdulla was stabilised, he was transferred to Sheikh Khalifa Medical City so that a comprehensive treatment plan could be developed for him. It was only then that Al Bedwawi was able to gather herself.

A mother’s resolve

She recollected how it felt surreal, picking up the first insulin doses for her son. “I had to get the insulin before he was discharged and I felt so removed from myself. I noticed, however, a young girl, probably aged eight or so, looking so happy as she received her own doses of insulin. She had a little kit to store her insulin injections and seemed radiant and happy, as did her mother.

“I told myself then that I wanted to be like that mother and have my son grow up as happy as that little girl. I decided, too, that it was not the end of the world for us. I had to be strong for my son, particularly as we didn’t have any other family member living close by in Abu Dhabi,” she said.

Al Bedwawi took her son home and in addition to adhering to a strict insulin regimen, she began to read up everything she could about living with Type 1 diabetes.

A disease for organised minds

“I felt like this was a challenge designed for me. I love organisation and Type 1 diabetes requires one to be intensely organised. You have to plan your meals and your medication schedule and you have to keep track of everything. So, this is what I set about doing for my son, with so much dedication that it felt like I would find a cure for the disease!” Al Bedwawi said.

Abdulla was safe and sound under his parent’s care, even with a stray incident or two.

Continuous vigilance

“These incidents creep up on all those living with diabetes. One Ramadan, when he was about four years old, my son had eaten a lot of sugary desserts and thinking that it would greatly elevate his blood sugar, I had given him a high dose of insulin. What I had forgotten was that blood sugar also drops suddenly with sugary desserts and the high insulin dose left him hypoglycaemic,” Al Bedwawi said.

She remembers how she could hear her son’s muffled words from his bedroom.

“When I rushed to his room, he looked like he could not even mouth the words. I rushed to get him to eat some sugary fruits as soon as I could, after which he asked to see a doctor,” she said.

Becoming an author

Soon after, Al Bedwawi decided she would write a book to make diabetes more understandable for young children afflicted by the condition. Thus, Sugar Boy — Thifl Al Sukkar in Arabic — was born. The children’s book Al Bedwawi penned focused on how young diabetics are not really sick.

Abdulla obviously loved his mother’s work and two years ago, he accompanied his mother and signed copies of the book as they were distributed on World Diabetes Day. “I wanted to tell my son, and other children like him, that they were not diseased. Instead, they were as sweet as sugar and therefore extra special,” she said.

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The cover of the book 'Thifl Al Sukkar' or 'Sugar Boy'. Image Credit: Supplied

Enjoying the challenge

Now that Abdulla is nine years old, and a Grade 3 student, Al Bedwawi said she is teaching him to monitor his glucose doses. “He cannot yet take the injections himself, but we play a game to guess his blood sugar level after every meal,” she said. The optimistic mother explained that she tried to turn diabetes-related challenges into little games for her son.

Educating others

Despite the seemingly overwhelming challenges of raising a child with Type 1 diabetes, Al Bedwawi has also found time to finish two graduate degrees — a masters in Business Administration and another in Arabic Language. Today, she is working on a PhD in Arabic Literature, even as she works to educate her children about Type 1 diabetes. “I’ve been giving my older sons crash courses in diabetes management, and they have all been so patient,” she explained.

Keep your guard up

Looking back on her journey, Al Bedwawi said she had come to understand that even the most experienced patients and their caretakers cannot afford to let their guard down.

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“Diabetes and its symptoms can creep up on you, so planning and monitoring are the keys. But it doesn’t have to stop you from living a normal life,” she said.

True to her words, Al Bedwawi has not only finished two graduate degrees, but has also written two other books since her first.

“For his part, my young diabetic warrior attends a normal school and today takes swimming lessons. So while I still have to leave my son’s bedroom door open so I can monitor him at night, it is not insurmountable,” Al Bedwawi added.