Nine-year-old, John Shepherd, is a very caring young man and has a tender heart for others. Despite facing a dual diagnosis of type 1 diabetes and celiac disease, John has learned to successfully navigate his schoolwork and is excelling in math, science, and reading. He has a wonderful sense of humor and has an impeccable ability to remember facts, riddles, and song lyrics.
“John is an inspiration to his sister, dad, and myself and to many others as he perseveres in spite of the difficulties presented by type 1 diabetes and celiac disease,” said John’s mom, Jenny.
John was diagnosed with type 1 diabetes on August 4, 2017. The following March, after two hospitalizations, it was confirmed that John also had celiac disease. Since then, John has been an inspiration by showing courage and strength in his determination to manage these diseases, but having both diseases has led to many challenges for John and his family.
“We are all still reeling from the diagnosis because you can’t ease into it. It is all or nothing,” said John's dad, Mike. “It’s been like riding a roller coaster. You can’t really manage diabetes, you have to constantly react and readjust. We are essentially acting as his pancreas!”
John’s greatest challenge has been managing blood sugar fluctuations that are affected by numerous factors, including but not limited to food intake, activity level, hydration, stress and illness. Rapidly fluctuating blood sugar can cause symptoms of dizziness, blurry vision, cloudy thoughts, agitation, lethargy, fatigue, weakness of limbs, nausea, and numbness in legs/feet and hands.
“As far as I know, type 1 diabetes is the only disease that affects so many different parts of the body from eyesight, to skin, to kidneys, to your cardiovascular system,” said Jenny. “We are all still grieving the loss of the carefree life we once lived. We also still fear all the complications that could happen if we fail to remain vigilant at managing the many variables with both diseases.”
The Shepherd family is thankful for advances in technology, which allows for easier management of both type 1 diabetes and celiac disease. John uses a continuous glucose monitor (CGM) that continually monitors his blood sugar every five minutes. The device connects to his phone via Bluetooth and also communicates with his parent’s phones, notifying them of high and low blood sugars. The family has also used the “Gluten Free Scanner” app to scan barcodes of food items. They have also found social media to be helpful for finding new, healthy and compliant recipes.
“John has struggled with feeling different because of his diseases, but he is persevering with daily management of his blood sugar and carefully monitoring his diet to avoid gluten and wheat, which is hidden in many foods,” said Jenny. “We are so proud of him and excited for him to be selected as a Kid Captain because of the positive impact he will surely have on others.”