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T1D KinFolk

On April 17, 2024, our lives were forever changed.

 

That day, I took my son Sekou to urgent care to see about his frequent trips to the bathroom at night. I thought he was just drinking too much water before bedtime, but I considered the possibility that it was a urinary tract infection. He was initially with me when I noticed the middle-of-the-night trips to the bathroom but since he seemed fine during the day, I dismissed the possibility of a UTI and decided a doctor’s visit wasn’t necessary. When he returned from his dad's house a week later, he was still getting up throughout the night. On the second night, he got up every hour like clockwork, and at one point went to the kitchen for water because he said he was thirsty. I fussed at him for drinking more water, thinking that was the reason he kept going to the bathroom. When he said, “But my mouth is dry,” I instantly thought the worst. After he went back to bed, I got online to do some research and Dr. Google confirmed what I feared. I prayed that it was just a urinary tract infection, or nothing at all, and went back to bed. I decided I’d take him to urgent care after school.

 

The next day, Sekou went to school without incident and I took him to a nearby urgent care after an already-scheduled eye exam. After a short wait, the nurse called us back and got all his vitals. Within seconds, a doctor entered the room and told me I needed to get Sekou to the ER immediately—his blood sugar was over 500. My heart sank.  I didn’t know what that number meant but the doctor’s plea that I take him to the emergency room right away was all I needed to know. Sekou, not knowing what that number meant either but hearing the urgency in the doctor’s voice, cried to me, “Am I going to die?” I’m sure my knees would have buckled from the weight of his words if I wasn’t already sitting down. I grabbed him and held him and told him, “No, baby, everything’s going to be okay,” as I willed myself to believe it too. 

 

The ambulance arrived within minutes and we were rushed to UCLA Hospital. We held hands for the entire drive and I held back tears as I looked at the fear in my baby’s face. 

 

The next couple hours were a whirlwind with a parade of doctors and nurses examining him and poking him. Tears welled up then streamed down his face each time the fear of the unknown grabbed him. It took everything in me to hold it together. I didn’t want him to see me crying, my tears confirming whatever thoughts raced through his mind. 

 

After a long night of tests and an ambulance transfer to a hospital nearby with an open pediatric bed, we were told Sekou had diabetes, likely Type I because of his age and size, but they were waiting on the results of a particular test. He stayed in the hospital for two nights and two days while they tried to stabilize his blood sugar. I stayed by his side, only leaving the hospital to get my car from the urgent care parking lot and to take a shower. His tears would come when the weight of it all would settle in, and I’d grab his hand to comfort him, still holding my own tears. We brought distractions from home to keep him busy, but in the moments in between games and meals and walks with his dad around the hospital campus, there was still the reality that life would never be the same. 

 

We had a crash course in Type I diabetes for two days, and on Friday, April 19, we were sent home with boxes and boxes of diabetes supplies and instructions to call the endocrinologist once a day.

 

Those first few months were the hardest. Carb miscalculations that led to too much insulin or not enough insulin and the highs and lows that created. Sleepless nights. Those daily calls with the endocrinology team. Doctors visits. Meetings with his school. The rollercoaster of emotions. 

 

We are still on that rollercoaster but things are much better. I thank God for the medical technology that has made diabetes easier to manage. But the reality is that this is our new normal—dietary changes won’t get rid of it, exercise won’t get rid of it—so I do my best to stay connected to resources to support him along this journey. In 2025, I signed us up for a diabetes family camp that had been highly recommended by his endocrinology team. I wanted him to connect with peers who understood what day-to-day life with Type 1 is like and I thought it would be cool for him to have his first-ever overnight camp experience. But he was not a happy camper, literally. We were the only Black family there. All the camp counselors were white. The director was white. At the end of the first day, he was ready to go home. I was heartbroken. He said there was no one there he could relate to. We left a day early, and on the two-hour drive home, thinking about how I could support my son and create the experience I wanted him to have that weekend, I had the idea for T1D KinFolk. I didn’t have a name then, but the seed had been planted. 

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When I think about what God has brought us through, I get teary-eyed. With a glucose level over500,  Sekou could have gone into diabetic coma, or worse. But God! Today Sekou is healthy and thriving at school and I’m grateful for God’s grace.