Living on a needle's edge: When your child has Type 1 diabetes

For families raising children with Type 1 diabetes, sleep is never restful. It is interrupted by alarms, finger pricks, whispered prayers, and the constant dread that blood sugar may drop too low or spike too high without warning. For these parents, caregiving is not just a responsibility, it is a 24-hour vigil.

From the first insulin injection to the countless finger pricks, from sleepless nights to relentless anxiety, raising a child with Type 1 diabetes, and for many families, the journey begins with confusion and fear.

Evelyne Mutheu was just ten years old when she was diagnosed in January 2016. Today, she is 20, a decade into living with Type 1 diabetes.

“I am the first person in my family to have diabetes,” she says. “No one else has it. There is no family history. At first, doctors thought it was typhoid.”

That initial misdiagnosis nearly cost her life.

“I was getting weaker. I was losing weight. I was thirsty all the time,” Evelyn recalls. “Eventually, we found out it was diabetes. Type 1.”

Unlike Type 2 diabetes, which is often linked to insulin resistance and lifestyle factors, Type 1 diabetes is an autoimmune condition. The body attacks and destroys insulin-producing cells in the pancreas. Without insulin, the body cannot use glucose for energy. The result is dangerously high blood sugar levels.

According to Dr Sofia Mwinyishee, a consultant paediatrician at Nairobi West Hospital, Type 1 diabetes is often misunderstood. “It is a lifelong condition where the body cannot produce insulin,” she explains. “Without insulin, glucose cannot enter the cells and remains in the blood.”

A recent report by the Access to Medicine Foundation ranks Kenya 44th globally among 113 low- and middle-income countries in the prevalence of Type 1 diabetes (T1D) among children and young people under 20. The findings highlight challenges, including limited access to insulin, gaps in early diagnosis, and poor glycemic control, despite some government efforts and support programmes.

According to the report, approximately 6,500 children in Kenya live with Type 1 diabetes, with 1,380 new cases reported in 2024 alone and 570 deaths recorded during the same period. These figures underscore the serious risk of preventable complications and mortality as many children struggle to afford or access the essential daily insulin their bodies need.

“For me, insulin is not optional,” Evelyne says. “It is survival. I inject insulin every day. Without it, I would die.”

For children diagnosed at a young age, fear is often the first emotion attached to diabetes. Fear of injections. Fear of hospitals. Fear of pain.

“When you are newly diagnosed, it is not easy,” Evelyne says. “You have to learn how to inject yourself. You have to accept that this is your life now.”

She injects insulin multiple times a day, checks her blood sugar regularly, and plans every meal carefully. Yet, even with years of experience, diabetes remains unpredictable.

“My sugar levels fluctuate,” she explains. “Sometimes they are too high. Sometimes they drop too low. Either way, it’s dangerous.”

When her blood sugar is high, Evelyne experiences extreme thirst, frequent urination, nausea, headaches, and numbness. When it is low, she risks fainting or seizures. “I carry insulin everywhere,” she says. “I also carry sweets or glucose because you never know when your sugar will drop.”

Public spaces bring another layer of difficulty. “Injecting insulin in public is uncomfortable,” she says. “People stare. Some don’t understand. Others think you’re doing drugs.”

At school, high blood sugar often forced her to miss classes. “Sometimes I would feel weak and couldn’t concentrate. People think you’re lazy, but they don’t see what’s happening inside your body.”

While adults like Evelyne manage their own care, parents of children with Type 1 diabetes shoulder a much heavier emotional and physical burden.

Samson Wahore, a father of three, still remembers the day his youngest son was diagnosed at the age of four.

“It shattered us,” he says. “Nothing prepares you for being told your child has a lifelong condition.”

Samson describes caregiving as a state of constant alertness. “You are monitoring blood sugar before meals, after meals, before sleep, and sometimes in the middle of the night,” he says. “There is no break. It is 24/7.”

His son uses two types of insulin - Novorapid, a fast-acting insulin taken before meals, and Lantus, a slow-acting insulin injected at night to regulate blood sugar during sleep. “Before breakfast, you prick the finger, calculate the sugar, and inject insulin,” Samson explains. “You do the same before lunch and dinner. Then at night, you inject Lantus.”

But the night is never truly peaceful.

“Sometimes you wake up at midnight to check sugar levels,” he says. “If the sugar is too low, the child could convulse in their sleep. If it’s too high, you risk ketoacidosis.”

Sleep deprivation becomes routine. “You live with chronic fatigue,” Samson says. “Your body is tired, but your mind never rests.”

According to Samson, the most heartbreaking aspect for parents is watching their child accept pain as normal. “When I see my son holding an insulin pen, my heart breaks,” Samson says quietly. “He asks me, ‘Daddy, where did this come from?’ And I have no answer.”

The injections are frequent and unavoidable. The finger pricks are constant.

“You prick the finger to check sugar. Then you inject insulin into the stomach, thighs, or arms,” Samson explains. “Sometimes the skin becomes sore. Sometimes it bruises.”

Teaching a child to inject themselves is another emotional hurdle. “I had to teach my son how to do it,” he says. “He is brave, but no child should have to learn this.”

Beyond the emotional toll lies an immense financial burden.

“Insulin is expensive,” Samson says bluntly. “Even when you get support, it is not enough.”

Many diabetes programs provide limited insulin often two pens per month. But growing children rarely follow strict routines.

“Children snack. They don’t finish meals. Their sugar spikes,” Samson explains. “Two pens are not enough.”

An insulin pen can cost between Sh950 and Sh1,000. Add to that the cost of glucometers, test strips, lancets, and monitoring devices. “In one month, you can spend over Sh2,000 or more,” he says. “Without insurance, it is devastating.”

Monitoring devices such as glucometers cost upwards of Sh1,200. Test strips must be replaced regularly. “If the device falls and breaks, that’s it,” Samson says. “You have to buy another one.”

Clinic visits every three months add to the expense, along with transport costs, especially for families outside major towns.

Schooling presents another major challenge. “You must find a school with a nurse,” Samson says. “Many public schools are not equipped.” As a result, some parents are forced to enroll their children in more expensive private schools.

“That alone is a financial burden,” he adds. “But what choice do you have?”

Even then, emergencies happen. “When you get a call from school, your heart stops,” Samson says. “You know something is wrong either the sugar is too high or too low.”

Children carry diabetes kits to school insulin, glucose, glucometers, and record books. “They are children,” he says. “Yet they carry responsibility like adults.”

Lucy Kimaru, another parent, understands this fear intimately. Her nine-year-old child was diagnosed in 2021. “At first, I was in denial,” she admits. “Injecting my child felt like torture.”

Over time, education helped.

“We learned how to manage the condition,” Lucy says. “It became less frightening, but never easy.”

She injects insulin into her child’s tummy, thighs, arms, and buttocks. “The needles are small,” she explains. “But emotionally, it is heavy.”

Lucy says stigma remains a constant challenge. “People think diabetes is caused by poor parenting or bad food,” she says. “That is not true.”

She also highlights gaps in healthcare. “Some doctors don’t understand Type 1 diabetes,” Lucy says. “Sometimes they blame parents instead of supporting them.”

Despite everything, she remains hopeful.“This is not a death sentence,” she says. “It can be managed.”

According to Dr Mwinyishee, common symptoms include excessive thirst, frequent urination, weight loss, hunger, and fatigue. In infants, the signs are often missed.

“Danger signs include vomiting, abnormal breathing, drowsiness, and confusion,” Dr Mwinyishee says. “Parents should seek urgent care and request a blood sugar test.”

Poorly controlled diabetes can be fatal. “High blood sugar can lead to diabetic ketoacidosis,” she warns. “This causes organ damage, brain swelling, coma, or death.”

Low blood sugar is equally dangerous.“Hypoglycaemia can cause seizures and permanent brain injury,” she says. “Night-time hypoglycaemia is particularly risky,” Dr Mwinyishee observes.

Long-term complications include kidney failure, vision loss, nerve damage, heart disease, and stroke. “Good control is essential,” Dr Mwinyishee emphasizes.

While insulin pumps and continuous glucose monitors can reduce the burden, their cost remains prohibitive for most Kenyan families.

For families living with Type 1 diabetes, life becomes a delicate balancing act between hope and fear, between love and exhaustion.

Caregivers inject insulin even when their hands shake. They wake up at night even when their bodies beg for rest. They calculate carbohydrates while worrying about tomorrow.

“This is not a journey I would wish on anyone,” Samson says. “But it is our reality.”

And still, every morning, they choose to fight for their children. 

Globally, diabetes is a growing public health concern. The World Health Organization (WHO) estimates that over 420 million people live with diabetes, with 80 per cent residing in low- and middle-income countries. 

Locally, the Ministry of Health notes that diabetes is among the leading non-communicable diseases in Kenya, contributing to 40 per cent of annual deaths. Despite some progress in awareness and treatment, young Kenyans with Type 1 diabetes continue to face significant barriers in accessing life-saving insulin and comprehensive diabetes care.