Type 1 Diabetes: Morgan’s Story of Successful Advocacy

Finding out that your daughter’s school would not have a nurse in the building to help her with blood sugar testing and insulin injections was something they refused to accept, and their advocacy lead to a change in the school’s policy.

First, a diagnosis

Morgan’s pediatrician in CHOP's Primary Care, Chestnut Hill, sent her to CHOP’s Emergency Department when Cynthia brought Morgan in with foamy urine as a symptom. A urine test indicated she had glucose (sugar) and ketones in her urine and was at risk for ketoacidosis, a dangerous condition when blood sugar and ketone levels are extremely high. During the four-day inpatient stay that followed, Cynthia, Andre and even Morgan’s older brother, Andre Jr., received training on managing Morgan’s diabetes.

“They promised us we wouldn’t go home ignorant, and they taught us everything we needed to do,” Cynthia says. “We had them train Andre Jr., too, so he’d know how to check her sugar and give insulin in case he ever needed to. We didn’t want him to feel left out.

“Giving her the needle was the hardest part. Morgan was the bravest of all.”

Once Morgan was home, Cynthia called the elementary school and told them Morgan, a third grader, would need help testing her sugar and with insulin shots. “They told me they would not be able to assist us,” Cynthia says. “I was shocked.”

Type 1 information and resources

But, in the same way members of the Diabetes Center team had prepared the family to medically manage Morgan’s diabetes, they also prepared the Knights for the social and real-life aspects of management. “The social worker, Terri Al’Hadi, told me, ‘This is the world you’re walking into. These are some of the challenges you may face,’” Cynthia says.

One information sheet gave resources, including how to tap into the American Diabetes Association materials on Morgan’s legal rights. Armed with information, Cynthia met with school officials. “I told them, ‘I know what my child’s rights are, what the school’s responsibilities are, and what the school district’s responsibilities are.’ They think parents don’t know and won’t fight for their kids. But I did know,” Cynthia says. “The school worked it out with the district to send out a nurse.”

That was a step in the right direction, but not enough. Initially, the assigned nurses were contract nurses, and a different nurse came to the school almost every day. “I still had to go to school every day to talk to the contract nurses to ensure that Morgan was OK,” Cynthia says. “They would tell me that the nurses had such and such years’ experience, but they didn’t know Morgan. My advocacy became about consistency: My child needs personal care, not someone with general knowledge.”

It took a couple months, but a school district nurse was assigned to Morgan’s school, providing consistency, and Cynthia felt Morgan was in good hands.

Following a helpful tip from a CHOP diabetes educator, Cynthia did her part to make things as easy as possible for the school nurse. When Morgan brought her lunch from home, it included a card that stated how many carbs were in it and the values so the nurse didn’t have to figure them out to calculate the insulin dose. The district nurse arranged for Cynthia to get the school lunch menu in advance, so when Morgan wanted to eat the school lunch, Cynthia could pre-count the carbs and calculate the insulin for those days, too.

In fourth grade, Morgan’s school care was split between district and contract nurses, but they were consistent, so it worked. Cynthia went along on any school trips to handle testing and insulin. At the start of fifth grade, the previous district nurse returned and trained her replacement. Now, on days when a nurse isn’t there, one of the teachers, who had previously worked as a nurse, fills in. That teacher covers for field trips, too.

“After that first year, Morgan would speak up if something wasn’t right,” Cynthia says. “She was able to instruct the nurses if there was a problem. I told Morgan that she needed to take control of her body and her diabetes. She’s very knowledgeable and confident.”

Confident in the classroom

That confidence shows up in the classroom as well. Morgan is an honor roll student who insists on making up every assignment and test she may miss due to illness or doctor’s appointments. “She can be a workaholic,” Cynthia says. “She refuses to give up. I think it’s because she feels like she doesn’t have control having a disease, so she works hard to control what she can. And getting great grades is something she can control.”

Morgan’s leadership project for Black Catholic History Month, which highlighted a leader who provided care for all (including those with diabetes), won a school-wide competition. Her principal then nominated her for a weeklong leadership program in Washington, D.C., this summer.

“She’s very excited about it,” Cynthia says. “Our only concern is she can’t take her parents.”

Diabetes can’t slow her down

Diabetes hasn’t stopped her from pursuing a variety of activities. Morgan, now 10, dances (hip-hop and jazz), sings in the school choir, and has explored track and ice hockey.

“She’s very active,” Cynthia says. “She loves to cook. We have a diabetes cookbook and she’ll look up recipes and tell us, ‘I want to cook this.’ Moroccan chicken is a favorite.”

Whatever challenges that may come Morgan’s way, together, the family will meet and overcome them.

“I’ve taught Morgan how to be an advocate for herself and how to be a leader, and her dad taught her preparedness and to use challenges to make them opportunities,” Cynthia says. “

“She’s doing really well, and nothing can stop her”