By Madeline Rathle
Amelie, daughter of Alysia Evans, was diagnosed with Type 1 diabetes when she was almost a year old. She is now 14, and both she and her family have learned a lot about the disease since her diagnosis. Type 1 diabetes is an autoimmune disease that can affect both children and adults. It can appear suddenly and at any age and is thought to be genetically or environmentally motivated.
A Big Change
When young children are diagnosed with this disease, it can be extremely difficult and stressful. “We had to learn how to give insulin injections and count carbs,” says Alysia. “We would constantly worry because she would suffer with low blood sugar and couldn’t communicate with us.” Amelie would also occasionally suffer from seizures, so the family had a lot of adjusting to do.
“You worry when your child isn’t with you. You worry when they have a sleepover that their sugar might drop low in the middle of the night,” says Alysia. “It’s a constant worry with no days off. The biggest struggle for Amelie is she has been living with it for almost 13 years, and she just wants a break, but with Type 1 diabetes, you can’t take a break.”
A Positive Outlook
However, Alysia knows that parents can turn this into a positive experience for their children. Alysia is the Development Manager at JDRF where she handles outreach with local hospitals and runs One Walk, a fundraiser for diabetes research. Alysia says, “My favorite part of my job is meeting newly diagnosed families and being a support system to let them know it’s going to be alright. Their child can live a normal life. I also love going out to the schools to talk to the kids and educate them about Type 1 diabetes, warning signs, and symptoms.”
Alysia has always done everything she can to encourage Amelie and support her. “I tell Amelie that she was given this disease because God knew she could handle it, and she is such an inspiration to everyone around her,” says Alysia. “She handles it with such grace and hardly complains.” By sharing their stories, children who live with Type 1 diabetes can impact others and help make a difference.
To the Future
The past few years have brought some great changes to JDRF. The organization helped fund the first “Artificial Pancreas,” which was just approved by the FDA. They have also been involved in funding smart insulin and encapsulation. And there is much hope for more accomplishments in the future.
“I definitely think a cure is possible, and it will happen!” says Alysia. “That is what pushes me to work so hard for Amelie and everyone living with Type 1 diabetes. I can’t wait to lose my job because that means we found a cure.” The JDRF research mission is to discover, develop, and deliver advances that cure, better treat, and prevent Type 1 diabetes. Amelie and her mother will continue their part to push for change and a cure. ■