Girl's Diabetes Diagnosis Inspires a Promise of Help for Families

Sophia Veit is drawing a picture, as second graders are apt to do. Circles and lines form a story of sorts to demonstrate her daily challenge.

For two years, Sophia has learned to manage juvenile diabetes (Type 1), a disease that in her words means "my pancreas said, 'I quit.'" Her portrait is the demonstration of how her body has malfunctioned, and for any parent is a picture they hope their children never have to draw.

"We are managing this disease, and it can be managed," said mom Amy Veit, who teaches at Lake Denoon Middle School. "I am grateful the diagnosis was not cancer, for sure, but even though we manage diabetes, it's relentless."

Normal one day, upside down the next

The Veits are a family of five, and just two years ago when Sophia was in kindergarten, she suddenly began to drink excessive amounts of water and continually go to the bathroom, classic signs of Type 1 diabetes.

Amy said she knew immediately what it likely could be, but was nonetheless devastated by the diagnosis that would turn their routines upside down.

With older sister Isabella ("Izzy") and younger brother Bo requiring attention as well, it can be difficult to give equal time when blood sugar levels must be constantly measured, generally about every two hours. Amy opened a cupboard in their home that she said was once "full of China and other dishes" to reveal a virtual library of diabetes information and medications.

Sophia's dad Sam said that there is no break, even while most people sleep through the night.

"We generally have to get up at least once every night, around 1 a.m., and if things are good, it doesn't take that long to check her. However, if there's been some stress, or some other factors that can push her numbers too high or too low, it can be a much longer night," Sam said.

The numbers are of blood sugar levels, which in a normal human body are regulated by the release of insulin from the pancreas. If Sophia's are too high or too low, the family is aware of the consequences.

"I generally can tell if (the blood sugar is) high," Amy said. "She is generally a bit crabby or can complain a lot, and that's just not her. She is a sweet girl and as a mom I know when something's off."

Too low and Sophia is lethargic, but often a snack can remedy that for the interim, and keep her from lapsing into a coma. 

Izzy has also been "a great big sister, with just a heart of gold, as she is with all of her friends, but she really takes care of Sophia," Amy said. 

Izzy explained that "when I could get my flu vaccine, I asked for the shot instead of the nose spray so Sophia wouldn't feel bad."

In addition to the six to 10 tests taken every day from a quick prick of her finger, insulin injections in the legs, arms or in the abdomen also keep the disease from killing Sophia. 

"It's like a groundhog day situation, you wake up and it's the same worries and need to stay on top of this," said Sam.

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Despair turns into direction

After almost a year of hanging in day to day from Sophia's diagnosis in kindergarten, Amy realized something had to change.

"I was in a Walgreens, and I simply lost it, I just broke down and cried, and it was just over having to make another decision, or take care of another task for this disease," she said. "And I would just lie in bed and cry. I knew this couldn't go on."

Opening a binder, she showed the meticulous recordkeeping of every test they have taken of Sophia's blood, which she said is a huge help for doctors. It also contained the laundry list of prescriptions that the Veits were handed after a four-hour meeting at Children's Hospital of Wisconsin just after her diagnosis.

"It's so much to take in, and you're just overwhelmed," Amy said. "I was told to also get Sophia a medical alert bracelet, and just that one additional task was like the last straw. I wanted to help new families by providing them with some of these things, and to connect with them to find support."

Thus, "Sophia's Promise" was born. The website (sophiaspromise.org) is a resource for information on the disease, which the Veits say is increasing in alarming rates in Wisconsin for kids. But it also contains personal stories, told often by the children battling juvenile diabetes. It's this personal connection with families across the country that Sam said is so meaningful.

"It's good to know families that are in your shoes, that have the same frustrations and can talk the same language," he said. "But we've also met families with much older children or young adults and that is inspiring for us as well as for Sophia."

Sophia's story is also known among many of her classmates at Tess Corners Elementary, which Amy said is key to being successful in managing diabetes.

"Her classmates learn about what Sophia has and she's comfortable in talking about it. Really, they are supportive but also keep an eye out for her," she said. "I'm surprised at people who keep this really private because it can be dangerous if the people around you don't know what the signs of trouble are."

Schoolmates join in the cause

Amy's school, Lake Denoon, recently joined in supporting Sophia's Promise with a fundraiser after Sophia spoke about her condition to seventh and eighth grade students at the school, which was a little more intimidating for her, according to Amy.

"She was nervous to talk to the older kids, but she did great and was really brave," she said.

The students in the Project i (project-based learning) classroom were so inspired by Sophia that they decided to hold a bake sale to raise money for Sophia's Promise, which is a 501(c)(3) non-profit.

With the guidance of their teacher, Peggy Moriarty, the students contacted Pick ’n Save to get permission for their location, coordinated bakers to make all the treats and recruited volunteers to help solicit funds.  The students, families and Moriarty also donated their baking skills and time on April 27 and 28.  Proceeds are still being calculated but were well over $600 and are being donated directly to Sophia’s Promise. 

Right now, the operating and administrative costs of Sophia's Promise are being absorbed by the Veits, so the funds were welcome. They are collaborating with Children's Hospital to distribute materials on Sophia's Promise to help the organization take flight. 

"We want to help as many people as we possibly can," said Amy.

As far as what her daughter's courage in telling her story publicly has meant to her, Amy said that it's not a surprise.

"She's already great. ... I don't know what more I could add."