Hilton family adjusting to 7-year-old’s Type 1 Diabetes
Emmarie "Emmie" Hilton mouths "I love you" to her father as she sits on his lap.
The background noise for the father-daughter exchange is multiple beeps coming from a cellphone monitoring system.
For some people, the beeps may be an interruption of a sweet moment, but the Hilton family is thankful for the sounds indicating when Emmie has abnormal blood sugar.
Emmie, 7, has Type 1 Diabetes. She was diagnosed in July 2015, but life has changed dramatically for the Mitchell family, including her parents Kellie and Jerry.
Now, aside from just monitoring blood sugar levels, the Hiltons are focused on raising money to aid in finding a cure for the disease.
"We just try to make the best of it," said Jerry Hilton, Emmie's father. "It's the hand that we've been dealt and we do the best we can."
The family has spent the first year of Emmie's diagnosis trying to to figure out her disease while also raising their other two children, 1-year-old Harlow and 9-year-old Aylah.
Emmie and her family fundraised more than $4,000 for the JDRF: One Walk, held April 30 in Sioux Falls at the Sanford Research Center. JDRF is an organization looking to find a cure for diabetes and assist in families recently diagnosed.
As the years go by, the Hiltons will continue to learn about Emmie's diagnosis and to support efforts to find a cure.
"The hope is that they find some sort of a cure, so she doesn't have to go through the shots and the stuff she has to deal with," Jerry said. "Ultimately, that's the hope, but in the meantime, we try to keep her blood sugars as stable as possible."
'Something's not right'
Jerry and Kellie noticed Emmie had been drinking more water and going to the bathroom more frequently. But, Kellie realized there was problem when she went to clean Emmie's room and was shocked by the discovery.
"I found empty water bottles, empty cups and thought, 'Something's not right,'" Kellie said.
Kellie recognized the signs of diabetes because her sister was diagnosed with Type 1 as a child. According to the National Institute of Diabetes and Digestive and Kidney Diseases, Type 1 Diabetes is a condition in which the body stops producing or does not produce enough insulin because the immune system is attacking itself.
The couple decided to do to a home blood test using a kit Kellie had for her gestational diabetes from a recent pregnancy. Emmie fasted and when her parents took her blood sugar it was 480. According to the American Diabetes Association, a blood sugar before eating ranges between
80 to 130. A blood sugar two hours after eating should be less than 180.
Jerry and Kellie called their pediatrician and were advised to go to Sioux Falls. With a blood sugar of more than 600, Emmie was admitted to the Sanford Children's Hospital.
Following Emmie's time at the castle-shaped hospital, she was taught to test her blood sugar and her parents received training.
"Gosh, we didn't know what to do when we got home with her," Kellie said, but the family enlisted the help of nutritionists, family, friends and other professionals to help them adjust. "We came home and life has been very different, but we're making it work."
One of the major changes for Emmie is she now has a Dexcom, a port that goes into her upper left thigh. The Dexcom is a 24-hour monitor that reviews the glucose in Emmie's body.
Kellie said the monitor has been a lifesaver.
"There's been nights when we've put her to bed at 200 thinking 'We're OK' and by 3, 4, 5 in the morning, we're getting alerts that she's dropping really fast and we need to get her some sugar," she said. "Without that, we never would have known that."
Emmie is able to be active with the Dexcom in her thigh, but her activity needs to be monitored so her blood sugar does not drop suddenly due to the physical activity.
She is involved in swimming lessons, swim team, dance, softball and Owana, a program of Mitchell Wesleyan Church.
"The biggest difference is that literally that she cannot eat or drink anything without us knowing what it is," Kellie said.
The family has had to count every carb that goes into Emmie's body, and before she can eat, she has to give herself insulin, even when she goes to school at Gertie Belle Rogers Elementary. She gets shots of insulin before every meal and before she goes to bed.
For Emmie to eat, Kellie and Jerry have to calculate the amount of carbs in the food she is consuming. They send a snack every day with Emmie along with a slip of paper that lists the amount of carbs in the snack so the school nurse and Emmie can provide the right amount of insulin.
"The staff and Nicole have just been amazing. There's no way we could do without them," Kellie said. "They literally watch her for us for eight hours a day."
The Gertie Belle Rogers Elementary office staff monitor an Ipad that notes Emmie's blood sugar throughout the day. But, Kellie is never far away. She works at a local eye clinic three blocks from the elementary school, and she is able to come to the school whenever.
"There's been lots of trips that I've had to make when Nicole can't be there," Kellie said. Jerry works in Madison at Custom Touch Homes, and he is appreciative that Kellie is close to Emmie if problems arise.
"We couldn't be more proud of how she's handled all of the changes she's had to deal with over the last year," Jerry said. "Emmarie's been a trooper through all of this."
Emmie's diagnosis has created change for the family, but they choose to look for ways to positively manage the changes.
In addition to Emmie's diabetes, Kellie and Jerry's youngest daughter, Harlow, has a mild form of dwarfism that requires additional attention.
"It's obviously added some stress that we try to deal with and make the best of," Jerry said.
The parents of three have had to combat their oldest daughter feeling left out due to the attention her younger siblings require.
"I think for Aylah it's probably been the hardest," Kellie said. "She just came to us the other day and said, 'It's not fair.' We said, 'We know it's not fair. It's not fair for Emmarie either."
To balance their situation, the family began going to Mitchell Wesleyan Church because of their crazy life, Kellie said.
"Mitchell Wesleyan has been really good for us and helpful for our family going through everything," she said.
An additional way the family has managed their situation is through the support of their family and friends.
"A lot of the support we have from our family and friends is a big part of it," Jerry said. "We wouldn't be able to get through all the things that we've gone through without our family and friends."
The family was also contacted by JDRF, and they decided to complete the annual walk and fundraise for a cure.
According to Tammy Beintema, senior development manager with JDRF, individuals involved in the walk fundraised prior to walking in the event in late spring.
"The event itself is a celebration for the funds that we have raised, and it's also a great day for the families to come together and support one another," Beintema said.
This year the JDRF: One Walk in Sioux Falls raised $192,076.
The funds raised for the JDRF: One Walk are used for Type 1 Diabetes research around the world, but Beintema said some of the funds return to South Dakota. The research efforts in South Dakota include families in the state completing trials with TrialNet, a diabetes research network, and other funds going to hospitals in the state.
Kellie said their family will "absolutely" be completing the walk in 2017.
Emmie created a team for the JDRF: One Walk called Emmarie's Glucose Patrol. Her team members wore shirts in Emmie's favorite colors: pink and yellow. For the walk, they raised $4,360 and had 52 people walk.
"It was a really, really special day for us to support Emmarie and support everything she has to go through everyday," Kellie said. "It was a neat day."
Emmie enjoyed the bouncy houses and other fun activities available, but her favorite part of the day was seeing friends and family after a long time of not seeing them. She had friends of the family that drove from Rapid City to Sioux Falls specifically to support her.
In the end, Emmie's parents are concerned about her condition, but have a positive outlook for their situation.
"You worry about her every moment of every day," Jerry said. "There's not a minute that you don't worry about what her blood sugar is not and what's going to happen to her, but things could also be worse."