World Diabetes Day: How mother's book on son's condition aims to unravel type one diagnosis

Rocco Wilks, seven, has learnt to monitor his condition with help of technology

Abby Lyons with her son Rocco, who has type one diabetes. Photo: Lyons family

A simple nappy rash that stubbornly refused to clear up helped one mother diagnose her young son with type one diabetes, and led her on a path to publish a children’s book to help other families understand more about the health condition.

Rocco Wilks was two when his British mother, Abby, noticed worrying changes in her son’s sleeping, eating and drinking habits. The toddler began to lose weight, had a voracious appetite and was always thirsty.

While not uncommon for an active youngster living in the Middle East, the changes worried his mother. Speaking about their experiences on World Diabetes Day, the family, and doctors, said juvenile diabetes can be a challenging condition to manage.

“The one symptom that actually nailed it for us was his nappy rash, as he was out of nappies, except for at night,” Ms Lyons told The National. “And it was really bad. I went to the doctor, he sent us away with some cream, and then Rocco became quite unwell with vomiting and headaches.”

Urine sugar

Doctors said the rash could have been caused by excessive sugar coming out of the urine. After a few quick tests, they diagnosed him with type one diabetes, which came as a shock to Rocco’s parents and his two brothers, Marley, 12, and Maddox, 10.

Since his diagnosis, technology has stepped in to help the family manage his condition, enabling him to live a normal life. It has not, however, been an easy path. “When Rocco was diagnosed, it was such a shock and not something you ever expect,” said Ms Lyons.

“The doctors focused on insulin and the medicine, which obviously he needs, but if you don't understand how the food impacts the body, insulin is pretty useless.

“Every minute is difficult with diabetes, and every day is different with that body. One day you might know what's going to happen with his blood sugars, but then he might be getting a virus, have a lot of exercise at school or be stressed which can all have an affect. It is the most challenging thing to manage.”

While type two diabetes is often associated with poor lifestyle, making the body resistant to insulin, the type one diabetes carried by seven-year-old Rocco is different.

In type one, the pancreas is eventually unable to make insulin at all. It can be triggered by a virus in otherwise healthy people at any point in their lives. It affects about nine million people globally, and has no cure. If left unchecked, a build up of blood glucose leads to ketoacidosis, a process that can be life-threatening.

Life threatening

Rocco’s blood sugars are monitored through wearable tech that delivers immediate information on his status to up to five linked devices. It allows his mother to keep tabs on his health on her mobile phone, even when she is out of the country.

To help other families with similar questions about a child’s diagnosis, Ms Lyons has published a children’s book, featuring Rocco and his dog Zizu, called What is Diabetes Anyway?

“If you Google type one diabetes, it is dark,” said Ms Lyons. “It just talks about going blind and losing limbs. It was so depressing. And I thought, this is not going to help anyone.

“I went into his school and explained to the kids what this was. I thought the more people understand, the less Rocco's going to feel different. There's a real need for conversation and this book was done in kind of a soft and friendly way to show there are so many people living with this disease.”

Fatigue, irritability and abnormal weight loss are usually seen in type one diabetes. Weight gain, fatigue and dark, velvety patches on the skin, particularly around the neck and armpits, known as acanthosis nigricans, are specific signs of insulin resistance seen in type two diabetes.

Dr Abdul Jabbar, an endocrinologist at Medcare Hospital Al Safa, said while type one diabetes was historically the more common form of the disease in children, that was beginning to change.

“Type two diabetes – a condition once seen only in adults – is now appearing in younger age groups due to the prevalence of obesity and sedentary lifestyles,” he said. “Children with a family history of diabetes or those living with obesity are at heightened risk of developing type two diabetes. This shift requires an urgent focus on prevention and early intervention.”

In the UAE, the rates of childhood obesity are among the highest in the region, with lifestyle factors playing a significant role. High-calorie diets, low physical activity and genetic predisposition are leading to an increase in type two diabetes diagnoses in children.

Global challenge

While technology is playing an increasingly important role in managing the condition, it can bring its own pressures. Globally, an estimated 537 million people are living with diabetes, or about one in every 10 adults.

Fears of blood sugar management and disease complications, food anxiety and over-monitoring can increase long-term mental and physical health risks, according to Dr Aarti Javeri-Mehta, at Sustain Health. “Diabetes is not just a physical condition; it’s a psychological battle,” said Dr Javeri-Mehta.

“It is multifactorial and takes into consideration the different challenges someone may face. This affects around 35 per cent of patients. Type one is a lifelong condition, so there are also emotional aspects to consider.

“We have children who have type one who are just five or six, some even younger than that. At that point we're not only treating the child, but working with parents to also get that diagnosis accepted by them.”

According to the International Diabetes Federation, 63 per cent of people with diabetes report that the fear of developing complications negatively impacts their well-being.

“We have clear evidence that technology, especially when it's a specific insulin delivery system, really does help to reduce complications,” said Dr Javeri-Mehta. “There have been certain studies that have shown youth take a little bit longer to get used to technology compared to adults, that can lead to a little bit of distress.

“It's really important children have that initial interaction with their doctor, so they can start making it second nature for them.”