Amelie's Story

Dear JDRF,

My family and I are fairly new to the JDRF community. We’ve been through a lot on our way here. I decided to share our story of stress, hard work, and bravery on the part of our daughter. Our eight-year-old daughter, Amelie, was diagnosed on September 20th of last year, shortly after her 7th birthday. As is usually the case, the diagnosis was big shocker, but especially for my husband Shawn. Shawn has seen first hand the effects of juvenile diabetes on a child, since his now 43-year-old brother was diagnosed at a very young age himself.

As a family, we were doing alright, however, we had one big unforeseen obstacle. My daughter’s school did not have a nurse on staff, which meant that my husband and I had to go to the school for lunch every day to administer Amelie’s insulin. This is not something we could continue due to our work schedules. When third grade came around we found a new school that had a nurse on staff full-time, which apparently is not the norm these days. We are so grateful that the nurse is there because we can be at work comfortably knowing that she is well taken care of while at school.

Last year, Amelie switched from taking insulin shots to using the insulin pump. The first two months were very difficult but we eventually figured it out. Amelie says that she would never go back to shots because with the pump diabetes management has improved. Of course, it will never be perfect; only a cure can make things perfect again. There are nights when I still check her blood glucose levels several times because she has been unsure of her blood glucose level before bed previously. Any parent with a type 1 child knows that it’s hard to sleep if their child goes to bed struggling to control their blood glucose level. It is a constant struggle that requires complete vigilance from both the child and the parents.

We need Amelie’s cooperation or all our efforts to keep her healthy and strong will be for naught. Even at eight, Amelie understands this responsibility and checks her levels prior to every meal or snack. What a big responsibility for a child! As a mother, I sometimes forget what a burden type 1 diabetes is on a child. They’re forced to grow up very quickly.  In Amelie’s case, she was overwhelmed and some time into the illness she started to develop anxiety over low blood glucose levels. She started testing herself every five minutes, she was both nervous and exhausted. Amelie’s endocrinologist team was able to get her counseling to help her understand her body’s response to type 1 diabetes. Thanks to them, Amelie is much happier as she is able to manage her diabetes correctly and with a healthy attitude.

This last year all of us in the Szakacs family learned a lot about managing type 1 and how different people react in unique ways to the effects of the disease. Amelie’s three-year-old sister, Ales, sometimes says she feels low because she noticed that when Amelie says it, she will get a juice box, glucose tablet or another sugary treat. Ales figured if she says she is low, she might end up with something sweet too, funny, yet quite sad…

I do hope, like all parents of type 1 children, that a cure will be found in Amelie’s lifetime. Or if not a cure maybe an artificial pancreas. Thanks to JDRF, I know as the family of a Type I child, that we are not alone. I understand that my struggle, as a mother, is shared with many other mothers out there. It’s somehow comforting and it makes the burden easier to carry. The weight is being distributed among many shoulders and it really helps! This is not only true for mothers like me, but it is true for children like Amelie. She has learned that there are other children, just like her, who have the same challenges.

For the first time, my family and I will be participating in the JDRF Walk for Cure. Last year, we were in the hospital with Amelie right after her diagnosis. This time, not only will we be able to attend the walk, but we have her one year anniversary coming up. We will use that day to celebrate how far Amelie has come.

Sincerely,
Angelika Szakacs