The daily life of a family facing their child’s type 1 diabetes: Jessie’s story

Hello, Jess. Thank you for agreeing to share your story with Carenity.

First of all, could you tell us a bit more about yourself?

Hello, my name is Jessie. I’m 25 years old. I’ve been with my husband for 11 years, and we’ve been married for a year. We have a little boy named Malo, who will turn 4 in January. Our whole family is passionate about cars and horseback riding.

Your son Malo has type 1 diabetes. How old was he when he was diagnosed? What were the first signs of the condition? What made you decide to consult a doctor? How long did it take to get a diagnosis? And what specialists did you see?

We discovered in September 2023, that my son, Malo has type 1 diabetes. The diagnosis was made at the hospital that day, but the symptoms started in August 2023. To give some context: in mid-August, Malo started with a new daycare, and it was a period of adaptation. At the same time, we were experiencing a heatwave. Malo isn’t a big water drinker, so I requested the daycare to make sure he was offered water regularly.

It all started on a Monday morning (his first adaptation session), and by Friday afternoon, the daycare informed me there was no issue with getting him to drink water, he was drinking very well. At the end of my summer holiday, I went back to work at the end of August, and Malo began going to the daycare full-time. We noticed he was drinking a lot, but we thought it was just because of the heat. Then he began urinating excessively (his nappies were leaking every morning, and his bed, sheets, and mattress cover were completely soaked). I tried switching to a larger diaper size, but nothing changed. He was drinking around 1 to 1.5 litres of water per day.

At that point, my husband and I felt something wasn’t right. I booked a doctor’s appointment, initially scheduled for September 18, 2023. However, on the weekend of September 9, we had an awful feeling, an instinct only parents can have. On the morning of Monday, September 11, I called our doctor’s office to request an urgent appointment. Malo was not only showing signs of excessive thirst and urination but also had acetone-smelling breath and noticeable weight loss.

We got an appointment that same morning. My husband, who was working from home that day, picked Malo up from the daycare and took him to the doctor. After examining him, the doctor ordered an emergency blood test. Malo returned to the daycare while we waited for the results, which we were told we’d receive later that afternoon. But before I even finished work at 5 p.m., my husband called to tell me the doctor had phoned, Malo needed to go to the hospital immediately.

Our doctor explained that the blood test results were alarming: Malo had severe hyperglycaemia and a dangerously high level of ketones. She praised us for advancing the appointment because waiting another week could have been fatal or caused serious complications. We went to the paediatric emergency department, where the diagnosis was confirmed. Malo stayed in the hospital for a week, during which his blood sugar was stabilized, and we were trained by a multidisciplinary team on managing type 1 diabetes, including how to use his pump, sensors, and calculate carbohydrates.

After the diagnosis, what were the most important steps for Malo and for you as his parents?

The first step was Malo’s week-long hospital stay. It was an incredibly emotional time for us. We were entering completely unknown territory, and there was a lot of information to take in about managing diabetes. The medical team was a great support, they trained us on how to use the insulin pump, glucose monitor, and carbohydrate calculations to make sure his meals were balanced.

After that, we had to adapt our daily lives: learning to count carbs, planning meals, managing blood sugar spikes and drops, all while continuing to work. Malo went back to the daycare fairly quickly, which required coordination to ensure that they were also trained to handle his diabetes.

The adjustment period was tough, but we quickly realized how vital organization is to avoid surprises. We also joined support groups for parents of children with diabetes, which gave us a space to share our experiences and ask questions of people going through the same challenges.

What does managing type 1 diabetes look like for your son now?

Malo uses an Omnipod Dash insulin pump and a Freestyle Libre 2 glucose monitor. The pump is attached to his arm or leg and needs to be replaced every three days. The glucose monitor is attached to his arm and is changed every 14 days.

The pump delivers a constant flow of insulin throughout the day, and we adjust the doses depending on his meals and physical activities. We also monitor his blood sugar levels multiple times a day with the glucose sensor and intervene if there are hypoglycaemic or hyperglycaemic episodes. This requires constant vigilance, even at night, as his blood sugar levels can fluctuate substantially.

How does Malo handle his diabetes day-to-day? And how do you, as his parents, manage it?

Malo is still very young, so he doesn’t fully understand everything. He knows he has a “magic pump” and that he needs to pay attention to what he eats sometimes. He’s very brave and adapts well, though there are some tough days, especially when it comes to changing his pump or sensor, which can be a little painful.

For us as parents, it’s a mix of constant stress and immense pride. We’re stressed by the daily management and the risks that come with diabetes, but we’re incredibly proud of Malo and his resilience. We try to stay positive and lead a normal life, even though it requires a lot of organization and sacrifices.

What are the biggest challenges you face daily?

Nights are particularly hard because we often have to wake up to check his blood sugar levels. Meal prep is another challenge, as it requires careful carb counting and anticipating how different activities will impact his blood sugar.

There’s also the emotional toll, staying strong for Malo even when we’re exhausted or worried. At times, we feel isolated because few people truly understand what it’s like to live with a child who has diabetes. Thankfully, support from healthcare professionals and other parents has been invaluable.

What message would you like to share with other parents going through the same experience?

You’re not alone. Don’t hesitate to seek help, ask questions, and reach out to associations or parent groups for support. Diabetes is a complex disease, but with time, you’ll learn to manage it and regain a nearly normal life. Believe in yourself and your child, they’re often much stronger than we give them credit for. ❤️

A big thank you to Jessie for sharing her story with us!

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