Why a 6-year-old with diabetes is pushing for change in Virginia

Speaking in front of Virginia lawmakers, 6-year-old Ruston Revell needs a wooden stool to reach the microphone for his testimony about diabetes.

Dressed in his blue suit and red tie, he’s there on a mission.

“Living with diabetes isn’t easy, there are lots of ups and downs — just like my blood sugar,” Ruston told legislators in the Virginia General Assembly.

The legislation that brought Ruston from Prince William County to Richmond would update an existing law to specify how Virginia schools handle accommodations for students with diabetes.

“When I’m at school, my nurse and all my teachers help me when I need it, but not all kids like me are that lucky,” Ruston told WTOP. “These bills change that, so kids with diabetes can be safer in schools.”

He’s testified before committees in both chambers as corresponding bills move through the Virginia General Assembly. HB1301 and SB122 have both earned support in their respective chamber.

“Although, I’m small, my voice is big and it can change the world,” Ruston said.

In his testimony, the first grader clearly explained the care he requires to manage his Type 1 diabetes during the school day.

“He just pops up on his little stool and takes control of the room,” said Kelly Revell, Ruston’s mom. “It’s usually a little quiet, and after he finishes, he gets a whole room full of applause.”

Today, Ruston enjoys playing baseball, swimming and spending time at the playground.

But things were different before his diagnosis five years ago.

A life-changing diagnosis at 15 months old

During the summer of 2020, Kelly said her son started showing signs of diabetes, such as extreme thirst — symptoms she recognized because her father had been diagnosed in his 20s.

“He would just lounge around the house and have no interest in playing with his sister,” Kelly said. “He stopped eating, so he was eventually airlifted to Children’s National in D.C., where he was admitted to the pediatric ICU for nearly a week.”

At just 15 months old, Ruston was diagnosed with Type 1 diabetes. Kelly said that news was life-changing.

“Now, in order to keep him alive, we have to hurt him multiple times a day, by giving him four to five shots and even a dozen finger pricks just to make sure his blood sugar is in range,” she recalled.

Type 1 diabetes is an autoimmune disease where the body attacks cells that make insulin. A lack of insulin can lead to high blood sugar, which could cause serious health issues or be deadly.

“We had to wake up at 2 a.m. every night for six weeks, before we started utilizing technology, just to make sure that he was safe and healthy with his blood sugar,” Kelly said. “A lot of times, it resulted in phone calls to the hospital because he was at a dangerous level, and then we would be up for hours making sure he was back in range.”

For the Revell family, managing Ruston’s diabetes looks different nowadays.

How a 6-year-old handles his diabetes

Ruston knows how to prick his finger to check whether his blood sugar is in range.

“My mom and dad help me change my insulin pump every three days, and my CGM every 10 days,” Ruston said, referencing his continuous glucose monitor, known as a CGM.

“It hurts, but at least I don’t have to do shots. They’re the worst.”

Living with diabetes, Ruston needs to calculate the number of carbs he’s getting to determine his insulin dose, which is administered automatically through a pump.

“He is a pro at using a food scale,” Kelly said. “If he wants to eat anything, apple slices, we cut them up, and he puts them on the food scale and determines how many carbs are in that.”

Halfway through his interview with WTOP, Ruston phone beeped, flagging his low blood sugar and triggering a quick juice-box break.

That’s the kind of intervention he could require at school.

“When I’m low, Nurse Barnes tells Ms. Grant for me to have a juice box or gummies,” Ruston said, describing a snack to correct his blood sugar.

At his current school, Kelly said Ruston has had all his medical accommodations met since his first day of kindergarten.

“He gets so many hugs. Everyone knows him. He walks into the front office every day to visit the clinic, and they just they really take care of him,” she said.

Things were more complicated before Ruston began kindergarten. Kelly said the family was initially told that the accommodations requested by his doctor would not be allowed.

“What was most difficult at the time was the thought that a kindergartener would be responsible for alerting adults if his phone signaled a low or high blood sugar, rather than having trained staff receive those alerts directly through available technology,” she told WTOP.

The situation was resolved, but it drew Kelly’s attention toward legal protections for kids with diabetes.

What Kelly and Ruston are asking Virginia lawmakers to do

“Prince William County has updated their diabetes policies recently, so more students with diabetes across our county are better protected,” Kelly said. “But that’s not happening everywhere in Virginia.”

The bills moving through the Virginia legislature would require school systems to create a divisionwide plan for supporting students with diabetes.

That would include making sure school staff are trained to follow through with a child’s medical orders.

“You really have to put in all of your trust in your school,” Kelly said. “This is a life-threatening disease, and if they forget to give him a juice box when he’s low, that can result in him going to the hospital, or it could be fatal.”

The legislation would also require schools have procedures for administering insulin and glucagon.

Families who have students with diabetes would send schools medical orders from their doctors that outline the child’s needs.

“A lot of times, the schools will either deny or modify these accommodations, even though they’re medically necessary,” Kelly said.

The statewide regulations haven’t been updated since 1999, Kelly said.

“While we’ve had all of these technology advances, like the insulin pump and the CGM, Virginia still hasn’t advanced their laws to align with standard methods of care that we’re using today,” Kelly said.

Ruston doesn’t receive insulin shots anymore. But Virginia law is behind on that front, according to Kelly and other advocates.

“Right now, the policy in Virginia, if his pump were to fall off while at school, they would, instead of reinsert the pump, they would give him a shot,” Kelly said.

In that scenario, Kelly said the school employee would have to calculate how much insulin to dose.

“I wouldn’t even know what to dose him, because with the pump, it’s automated nowadays,” she said. “It would require an immediate call to his doctor for guidance.”

She worries that it could lead to a miscalculation and health complications.

Kelly said the lack of consistency can impact older students, too. She said some high schoolers have gotten in trouble for having their cellphones at schools that ban the devices.

But those phones let students monitor their blood sugar, communicate medical treatments and administer insulin.

It’s the second year in a row that advocates like Kelly have asked legislators in Richmond to approve revisions to state law.

This time, Ruston is joining the push for change by sharing his story with lawmakers.

“I want to make sure other kids in different schools can have more help with diabetes,” Ruston told WTOP.

Anyone interested in following the legislation or submitting a comment to lawmakers can find more information on FOLLOW T1Ds’ website.

Source