Tiny warriors, big battles: Reality of children living with Type 1 diabetes

The lift doors at the diabetes clinic opened and a young boy walked in with his mother, bubbly and full of energy. He confidently pressed the button for the second floor with the ease of someone familiar with the building, then turned to his mother, awaiting a nod of approval. She smiled warmly.

Yet behind those smiles lies a far heavier reality, a life defined by four insulin injections a day caused by Type 1 diabetes.

The boy is Hudheifa, accompanied by his mother, Farida Muholo. During the COVID-19 pandemic, the entire family contracted the virus and recovered. However, for Hudheifa, who was three years old at the time, his health deteriorated afterwards.

After being admitted to the hospital for two months, doctors finally conducted a urine test that revealed he had diabetes.

“We stayed in the hospital for six months as doctors tried to stabilise him. We were discharged when his sugar levels were between 15 and 16,” Farida recalls.

Acceptance was difficult because no one in her family had ever been diagnosed with diabetes.

“It took time for me to accept it and be strong for my son,” she says.

Hudheifa has since been hospitalised repeatedly. The most difficult moment came last year. “He was in the ICU for one week. He was in pain and would scream, so we had to tie him down with ropes. I thought my child was dying. That is when I realised this disease is not easy,” she says, her voice breaking as tears stream down her cheeks. The interview pauses briefly as she composes herself.

“I’m grateful to God; I did not think he would reach this age. Ever since I joined the Diabetes Management Information Centre (DMI), he has at least become stable. Speaking with doctors here and at Kenyatta National Hospital keeps me going,” she says.

Diet challenges

One of the greatest challenges is monitoring Hudheifa’s diet, particularly when he is away from home. At madrassa classes, he is often tempted by biscuits and sweets.

“He has become cheeky. When he eats sugary foods, he drinks a lot of water, runs around and plays football,” she says.

Despite this, Hudheifa largely eats balanced meals rich in vegetables and beans. “If he takes bread, one slice has about 15 grams of carbohydrates. So if I give him three slices, I also increase the insulin units,” Farida explains.

Hudheifa takes insulin injections four times a day, before each of the three main meals and once at night.

At school, he hands his insulin to the teacher for safekeeping before injecting himself when needed. His meals at school are also closely monitored.

Farida says she has received endless unsolicited advice from people suggesting remedies ranging from okra water and hibiscus to claims that the illness was caused by witchcraft.

To parents whose children have been diagnosed with diabetes, she offers simple advice: “This disease is like any other. Listen to doctors and ensure your child eats a balanced diet.”

Asked what he understands about diabetes, Hudheifa responds matter-of-factly. “I inject myself so the sugar does not go up. If I don’t, I will become sick and foam will come out of my mouth,” he says.

“I also play a lot, go down the stairs, play football and drink a lot of water.”

Big dreams

When asked what he wants to become in future, Hudheifa smiles and replies: “I want to be a rich man.”

A similar story is shared by Purity Mueni, who discovered her two-year-old daughter Ruby had diabetes after she was admitted to the hospital.

We meet them at the DMI offices. Little Ruby walks ahead of her mother, her tiny frame bringing a sense of warmth into the room. She moves around, greeting people seated in the boardroom before returning to her mother at the opposite end of the table.

“Maji,” she says softly, trying to open her mother’s handbag where a bottle of water is kept. She is handed the bottle and carefully drinks from it, her tiny hands balancing the bottle.

“Doctors discovered she had diabetes last July. A week earlier, she had diarrhoea, was vomiting, stopped eating, was breathing very fast and was dull. At that time, her blood sugar level was 30,” Mueni says.

Two hours later, Ruby was moved to the general ward and her mother was informed that she had diabetes.

“I started crying,” Mueni says, struggling to hold back tears. “No one in my family had diabetes. I thought I was going to lose her.”

After one week in the hospital, Ruby was discharged and began attending clinics at Moi Teaching and Referral Hospital in Eldoret. Following the completion of her university studies, Mueni moved to Nairobi, where Ruby was referred to Kenyatta National Hospital.

“When we wake up, I first check her sugar levels. If they are high, I know how to correct them using insulin before feeding her,” she says.

Like Farida, Mueni was also told by some people that diabetes was not a normal disease and that she should seek spiritual healing. She ignored the advice and focused instead on medical guidance.

“Ever since I learnt she was diabetic, I have been unable to get a job because who will care for her. I am a teacher. Last September, I got a job and I used to go with her to work, but she kept eating sugary treats from other children, which raised her sugar levels, so I eventually decided to quit,” she says.

Checking Ruby’s sugar levels also requires creativity. “To check her sugar levels, I bring all her dolls and pretend we are playing. I prick the dolls first and then prick Ruby’s finger so she does not cry or run away,” Mueni says.

She advises parents of children with Type 1 diabetes to trust doctors and follow medical advice.

What is Type 1 Diabetes?

Dr Eva Wainaina, a consultant paediatrician at MP SHA Children’s Hospital and fellow in paediatric and adolescent endocrinology, explains that children can develop Type 1 diabetes even when neither parent has the condition.

“There are people with a genetic susceptibility. But on top of that susceptibility, they must encounter a trigger,” says Dr Wainaina.

Type 1 diabetes often begins with a small genetic risk, meaning some people are born with genes that make them more likely to develop the disease. However, having those genes alone does not guarantee they will become diabetic.

Doctors believe that a viral infection or another factor may trigger the immune system to attack the pancreas.

“You can think of it this way: a child may be born with the possibility of getting Type 1 diabetes, and then something, such as a virus, switches that risk on. The body’s immune system then starts attacking the cells in the pancreas that produce insulin,” Dr Wainaina explains.

Autoimmune disease

“When your body fights infections, it forms antibodies. Usually, those antibodies help you recover. But in Type 1 diabetes, the body starts fighting the pancreas itself. That is why it is an autoimmune disease.”

The doctor explains that the pancreas contains beta cells responsible for producing insulin. In Type 1 diabetes, the immune system attacks and destroys those cells, meaning the pancreas can no longer produce insulin.

Once more than half the beta cells are destroyed, symptoms begin to emerge.

“A child may start developing constant infections. You may find a four-year-old girl with candidiasis. They lose weight, but many people still miss the signs because blood sugar is rarely checked,” she says.

“But unfortunately, your body can only stretch so far.  There comes a day when you now get into desaturation, which we call diabetes ketoacidosis, DKA.”

Diabetic ketoacidosis (DKA) occurs when the body lacks insulin and cannot use sugar for energy. Instead, the liver breaks down fat into acidic substances called ketones, which build up to dangerous levels in the blood.

Key symptoms include extreme thirst, frequent urination, vomiting and confusion.

The doctor adds that many symptoms are often mistaken for malaria or pneumonia, leading to delays in diagnosis.

“A child may be treated with antibiotics or anti-malarials, but if you simply do a random blood sugar test, you discover the child’s sugar level is 27,” the doctor says.

Unlike Type 2 diabetes, Type 1 diabetes is irreversible, meaning patients must remain on insulin for life.

Doctors say younger children often accept their diagnosis more easily, but challenges intensify during adolescence.

The doctor explains that strict dietary restrictions are more commonly associated with Type 2 diabetes.

“People with Type 2 diabetes are told not to eat white rice or white chapati and to take brown ugali instead. But think about a six-year-old child; telling them they cannot eat cake or rice is unrealistic,” the doctor says.

Carbohydrate counting

“For children with Type 1 diabetes, we allow them to eat what they want, but we adjust insulin according to the amount of carbohydrates consumed. This is known as carbohydrate counting.”

Every meal for a Type 1 diabetic child involves three steps: checking blood sugar levels, calculating carbohydrate intake and adjusting insulin accordingly.

With Type 1 diabetes, insulin doses are not determined solely by blood sugar levels. They are also calculated based on body weight and the child’s age/stage of growth.

Eunice Munyeri, a clinical officer at the DMI, insists that Type 1 diabetes is not any patient’s fault.

“Sometimes parents think their child developed diabetes because they ate too many cakes and sweets when they were younger. It is not the patient’s fault. Their body has simply turned against itself,” she says.

Munyeri explains that Type 2 diabetes mainly affects adults and anyone can get it. It occurs when the body either does not produce enough insulin or becomes resistant to it.

“In such cases, medication is used to bridge that gap,” she says.