Four siblings with T1D, one care team there for them all

Jessi's first trip to Children's Health℠ was in an ambulance with her then 13-month-old son, Abdulhadi. That's when she learned he was experiencing a life-threatening complication of type 1 diabetes (T1D) called diabetic ketoacidosis (DKA).

When her oldest child, Abdurahman, was also diagnosed with T1D one year later, she had her other children take a blood test that detects pre-diabetes antibodies. When the results came in, Jessi learned that her son Muhammad was on track to develop T1D, as well.

The Pediatric Diabetes Program team welcomes a new family

Jessi still remembers the shock she felt when doctors told her that Abdulhadi had T1D.

"It was unexpected because no one in our immediate family has diabetes, so we didn't know what the diagnosis meant then or for the rest of our lives," Jessi says.

Abdulhadi spent a week at Children's Medical Center Dallas, including three days in the Intensive Care Unit. That's where the family met Soumya Adhikari, M.D., Pediatric Endocrinologist at Children's Health℠ and Professor of Pediatrics at UT Southwestern, and other specialists across the Pediatric Diabetes Program who would guide the parents through every aspect of having a baby with T1D.

"T1D symptoms can be hard to identify, especially in babies. Most kids gradually become easily fatigued, they become more thirsty than normal and have to use the bathroom a lot, but those aren't obviously abnormal behaviors," Dr. Adhikari says.

One of the first things the family learned was that T1D is an autoimmune disease. It happens when the immune system attacks the cells in the pancreas that make insulin. Having T1D requires 24-hour monitoring and careful attention to what you eat, drink and how much activity you do.

"There was so much to learn, such as how much insulin do you give a baby who is still breastfeeding? At every feeding, the amount and content of the milk can be different. When he would wake up at 2 a.m. to nurse, I would have to give him a shot of insulin, and it was trial and error to figure out what the right amount was," Jessi says. "I'm thankful the Children's Health team was ready with all the training I'd need."

A mom's hunch leads to her second child's T1D diagnosis

Just as Jessi was feeling confident in managing Abdulhadi's diabetes, her oldest child, Abdurahman, mentioned that he was going to the bathroom a lot.

"I decided to check his blood sugar, mostly to rule out T1D as a cause," Jessi remembers. "But the glucose meter measured his blood sugar at over 500 mg/dL. Blood sugar is considered high if it's over 180 mg/dL in kids, so I had him wash his hands, and I checked with a different meter to be sure. When the second reading came back the same, I was in shock, thinking, 'How could this be possible?' Then I called Dr. Adhikari."

With that second diagnosis, Dr. Adhikari asked Jessi about having her other children, Muhammad and Maryam, who were 4 and 7 years old at the time, tested for T1D antibodies.

"It's a simple blood test that identifies T1D antibodies. When two or more antibodies are present, there's about a 50% chance that a child will develop T1D in the next few years. If there are three or more, we expect the disease to advance even more quickly," Dr. Adhikari says.

Muhammad's test showed that he had all five antibodies and that he was in Stage 2 of T1D.

"Stage 2 means you don't have symptomatic T1D yet, but your blood sugar levels are slowly becoming abnormal because your immune system is starting to attack the insulin-producing cells in the pancreas. The final stage is Stage 3 when the immune system overcomes your ability to produce enough insulin to manage blood sugar," Dr. Adhikari says.

Becoming an advocate for kids with T1D

This time, instead of being overwhelmed by having T1D change another one of her children's lives, she decided that she wanted to be an advocate – for her kids and all T1D families.

"It's a huge change in your life when a child needs to start taking insulin and monitoring their blood sugar 24 hours a day – even through the night. Having access to treatment and therapies to avoid or delay T1D is valuable," Jessi says.

Dr. Adhikari wholeheartedly agrees. For him, being able to screen patients means he can educate families about the early warning signs, so they're prepared when their child's T1D progresses to Stage 3.

Several months after discovering he was in Stage 2, Muhammad's T1D progressed to Stage 3. Jessi remains focused on helping her kids live their healthiest lives. While her older kids independently manage their T1D, Jessi's youngest daughter, Fawzia, developed T1D when she was just 17 months old. Now 8, Fawzia is learning to take the lead with her T1D like her older brothers.

"Jessi is a passionate champion for her kids and deserves the majority of the credit for her children's health," Dr. Adhikari says.

Today, Jessi leans on hope for a future where every child with diabetes has access to therapies that minimize the burden of T1D.

"There's a Winnie the Pooh quote that says, 'You're braver than you believe, stronger than you seem, and smarter than you think.' The Children's Health team has given me the confidence to see all those things in myself," Jessi says. "Now we're able to give something back by helping them make progress in better understanding T1D and finding new treatments."

Learn more

The Children's Health Pediatric Diabetes Program is consistently ranked one of the best in the country. Our patient-focused program prioritizes understanding each family's unique needs and lifestyle. Children's Health endocrinologists have access to the most advanced treatments and support services to help every patient live their most fulfilling life.