Layla's Story: Type 1 Diabetes

Flashback to December 18, 2021: Our 5-year-old daughter, Layla, had been feeling pretty rough for the past few days - not much of an appetite, headaches, drinking a lot more fluids than normal, stomach pains, and waking up multiple times to pee each night. The last symptom was super unusual for her since she has been potty trained both night and day since she was about two years old. Being the Potty Training Consultant, I put all my typical techniques to work to help her stay dry through the night but nothing was helping, if anything it was only getting more and more frequent. Layla's dad, Raj, has Type 1 Diabetes, so it crossed our minds since these can also be symptoms of high blood sugar, but we quickly brushed it off thinking there was no way that would be happening to our sweet little girl.

On the morning of December 18, Layla woke up looking like death warmed over. She had lost about 5 pounds (which is a lot when you only weigh 38 pounds to start with!), her eyes were sunken and dark, and she hardly had any energy at all. I knew something was very wrong and took her straight to the doctor. Based on everything she was experiencing, the doctor ordered a urine test and finger stick to check her blood sugar. As the number flashed on the meter - 520 - I knew exactly what that meant and my heart just broke. Layla had Type 1 Diabetes Mellitus (previously known as Juvenile Onset Diabetes) just like her dad. And at this particular moment, she was in diabetic ketoacidosis because her urine also showed a high level of ketones and protein.

The doctor instructed us to go straight to the emergency room because her life was at stake. DKA is a life-threatening condition caused by the body not being able to make enough insulin to allow your cells to use sugar for energy, so it starts to use up protein and ketones instead, turning your blood acidic. We went to the closest hospital and while they were able to get her stabilized, they weren't set up to treat children, so we were transported by ambulance to Johns Hopkins in Baltimore, Maryland. Layla spent 3 days in the PICU being constantly monitored until she was no longer in DKA. There were so many pokes and pricks - from IVs, to finger sticks, to injections - and Layla would scream and cry through every single one. She's never been a fan of needles (not that anyone is)! They were the 3 hardest days of my life. Seeing your child in such a vulnerable state is nothing any parent should have to experience.

The doctors informed us that Layla was going to have to be on insulin for the rest of her life - there is no cure for Type 1 Diabetes. This isn't your grandfather's diabetes - it can't be managed by taking a pill or watching what you eat. We spent countless hours training with the nurses and doctors on how to properly care for her. We now have to count every carb she eats, know how to calculate how much insulin to inject, how to treat for high or low blood sugar (which can be super dangerous and happen at any given time), how to monitor her sugar level trends, and how to insert her continuous glucose monitor. Any time her routine changes, she goes through a growth spurt or catches a virus, everything fluctuates. It's a constant process of adjusting and worrying that you're making the right decisions.

Layla is used to the needles, injections, finger sticks, and sometimes having to wake up in the middle of the night to eat fruit snacks now, but it's been almost a year and T1D still consumes a large part of our days. She is truly an inspiration with all she has to go through on the daily, all with a smile on her face. A few weeks ago, one of her young friends asked me if Layla wanted to have diabetes to which I responded, "No one wants to have diabetes!" But Layla quickly corrected me and said, "Mom! I like my diabetes! It makes me special."

To follow along with the ongoing story of our life with T1D, be sure to follow me on Instagram! We've made it our mission to raise awareness about this lifelong disease and spread love to all of our fellow T1D families around the world!

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