0
Votes

Working For A Cure

Great Falls family raising money for diabetes research.

For Natalie Richardson, her heart is not the only pump she needs to live.

Two years ago, the 10-year-old noticed she was rapidly losing weight, dropping from 70 pounds to 58 pounds in the course of a month.

“I was being a little lazy, just sitting around the house, and I was losing all this weight,” she said.

“A parent doesn’t typically weigh their children. I thought she was just going through a growth spurt,” said Natalie’s mom, Judy. “When her legs became spindly, we went to the pediatrician who sent us immediately to the hospital.”

After a series of tests, Natalie was diagnosed with Type I, or Juvenile Onset, diabetes.

Natalie remembers thinking she was going to die from the disease right away. “Her blood sugar level was so high she could’ve slipped into a coma,” Judy said.

Typically, a person’s blood sugar can range anywhere from 70 to 120 grams. For Natalie, who lives in Great Falls with her family, her target range is between 80 and 150 grams. Blood sugar levels are typically lower before a meal or after exercising and higher after eating.

If her sugar is too low, she can become dizzy or weak and could fall into a coma. Should her sugar be too high or too low for any length of time, her organs can be severely damaged.

A normal day for Natalie starts with her mom waking her up to test her blood sugar: a simple prick on the finger, squeezing out a tiny droplet of blood onto a test strip and inserting the strip into a testing device. The number comes onto the digital screen, which will let them know how much insulin she’ll need to start the day.

THROUGHOUT THE DAY, Natalie needs to check her insulin levels about eight to 10 times to make sure her blood sugar level isn’t too high or too low. Whenever she eats, she needs to determine the amount of carbohydrates in her food in order to inject herself with the right amount of insulin.

“Her breakfast is always about 50 grams of carbs,” Judy said.

For every 12 grams of carbohydrates, Natalie needs 1 unit of insulin, so for a breakfast that has 50 grams of carbohydrates, she needs 4.15 units of insulin to make sure her meal digests properly and the sugar is broken down correctly, Judy said.

“If she’s off by 10 grams of carbs, she could be too high,” she said.

During the school day, Natalie carries around a small purse, containing her test kit, some glucose tablets that she can eat if her sugar gets too low, and a snack, usually a granola bar, she said.

“Sometimes I have to test myself in the middle of a class,” Natalie said. “If I feel fine, I usually don’t have to.”

“It’s a guessing game,” Judy said. “It’s a roller coaster, and you don’t want that. We’re usually in a nice, safe range, but her levels need to be monitored all the time. Sometimes the amount of insulin she needs has to be adjusted, like if she’s been sick or especially active with soccer or something.”

Most diabetics get the insulin they need through injections given throughout the day, usually before meals. Natalie is taking a different approach to getting the insulin she needs: she carries a small, teal-colored pump in a pouch clipped to her jeans that is attached to a tiny tube that constantly drips insulin into her bloodstream.

“The pump has been a real help,” she said. “Before, if kids brought in treats to school I’d have to resist or bring it home” to have her mom figure out how many carbohydrates were in it. “Now I have to guess how much is in it, and I can enjoy it with my friends.”

INSTEAD OF FILLING a syringe with insulin, Natalie can enter the amount of carbohydrates into the pump’s computer, which determines the amount of insulin she’ll need. She then can “bolus” the pump and increase the amount of insulin in her body.

“She can eat what she wants when she wants,” Judy said. “It gives her flexibility. If she didn’t have the pump, she wouldn’t be able to do that.”

The tube, which is attached to her stomach by a tiny plastic device that looks like a suction cup, must be changed every three or four days to prevent infection, she said.

If Natalie is playing a sport or going swimming, she can remove the tube from the clip on her stomach and turn the dial to close the opening, Judy said. She can remove the tube for an hour or so at a time.

The pump is operated by a single AA battery and will beep if the battery starts to run low on power, or if the small vial of insulin starts to run out. A 10-milliliter bottle of insulin will last several weeks for Natalie, and there are 100 units of insulin per milliliter. One bottle has roughly 1,000 units of insulin.

After having the pump for a little over a year, Natalie can operate it by herself without any help, although she still can’t quite handle inserting the tube.

“I can’t look at it. It creeps me out,” she said with a smile.

“I feel better now. I basically have everything under control,” she said, with a matter-of-fact tone in her voice that sounds much more mature than any 10-year-old girl should have to be. “My pump is like my savior.”

There are days when she wishes her diabetes would go away. Those are the days Judy hates most.

“As a mom, I think we worry about our kids more than they worry about themselves,” she said. “That’s why I get up in the middle of the night to test her. She’s supposed to test herself every two-and-a-half hours, and if she doesn’t, an alarm goes off and I instantly worry.”

When Natalie is in school, every time she tests her blood, the reading is sent to Judy’s cell phone like a text message, one example of the advances in treating diabetes in recent years.

“We’re getting closer to a cure every single day,” she said.

To help the effort to find a cure for diabetes, Natalie and her parents will be participating in the Juvenile Diabetes Research Foundation’s Walk To Cure Diabetes walkathon on May 7 in Washington, D.C., and also in the inaugural walk in Northern Virginia on June 12 at the Landsdowne Resort in Loudoun.

“This will be our third year walking,” Natalie said. “We’re doing this with my Girl Scout troop and raising money for research.”

So far, Team Natalie has raised over $1,000 for the Washington, D.C. walk. Letters featuring a photo of Natalie with her dog, Toby, have been e-mailed to family and friends, asking for support for the walk.

“The Walk to Cure Diabetes started as a family picnic more than 30 years ago,” said Megan Beste, special events coordinator for the Juvenile Diabetes Research Foundation Capitol Chapter in Washington. This year’s event is expected to draw over 5,000 participants and raise over $1.25 million for diabetes research.

“We encourage families and friends to walk and to invite their youth groups from church, scout troops, clubs, anything they participate in to join them,” Beste said. “It shows a real sense of community, and for the kids who have diabetes it shows hope and makes them feel like they’re part of a support group.”

ONE OF THE things she likes most about her job is “connecting families to each other,” especially with newly diagnosed patients, she said. “We prefer to look at it as living with diabetes instead of suffering from it, and this way the families don’t feel they’re the only ones dealing with it.”

At least 80 cents from every dollar raised will go directly to research, she said. “The research is actually hard to keep up with because it is changing every day,” she said, which makes the Foundation and diabetics very enthusiastic that a cure could be obtainable relatively soon.

“Until there is a cure, we’ll follow every possible track we can,” Beste said. “We’re making sure that the technology and resources are there to keep the families on the cutting edge of living with diabetes,” she said.

During the Washington walk, Natalie and her family will be joined by her Girl Scout troop, led by Dr. Kristen Runke, an optometrist in Great Falls.

“In our troop, we’re always trying to promote awareness as a daily part of our lives,” she said. “This is a way of doing community service in a way that’s much bigger than picking up trash.”

The troop, made up of seven girls including Natalie, came up with the idea of walking with her on their own, she said. “We all know about her diabetes and have watched her go through it,” she said. “We’ve seen her pull out her pump during our meetings and give herself insulin. Sometimes the girls feel bad because they’ll have a treat and Natalie can’t have any.”

The girls will be wearing matching T-shirts and bandanas that Judy is having made for the event, she said.

“If you start talking to kids early about charity, hopefully it’ll carry with them through life,” Runke said. “I’m proud of the girls.”

Until a cure is discovered, however, Natalie and her family will continue to monitor her disease intensively.

“It becomes a new way of life,” Judy said. “I’d love to not have to wake her up in the middle of the night to test her blood. But this is 24/7. There are no vacations.”