Katherine Jean is 5 years old. She is sweet with a little spice! Her favorite things to do are going to school, playing dress up, and playing with her dolls.
KJ became very sick when she was only 2 months old. At that time, she weighed 7 pounds. She was diagnosed with diabetes and spinal meningitis. During her recovery from diabetic ketoacidosis, she had a stroke and multiple seizures. As you can imagine, it was extremely difficult to treat such a tiny baby.
Since KJ was diagnosed at such a young age with diabetes, genetic testing was done to gather more information. Two months later it was determined that she had Monogenetic Permanent Neonatal Diabetes. KJ’s biological father was diagnosed with Type 1 diabetes when he was 11 months old. When KJ tested positive for Neonatal Diabetes, he then had genetic testing to show he also had the same thing. He had 1 specific gene that was mutated which caused his diabetes and she inherited that mutated gene from him. She now has a younger brother who also has the same gene mutation, therefore he is also diabetic.
I am biologically Katherine Jean’s paternal grandmother so when she was diagnosed at such a young age, I knew what was in store for her future. Honestly, it was devastating. When KJ was about 18 months old, the 24 hour/7 day a week care became too difficult for her biological mother and she was put into ICU due to lack of care. At that time, my husband and I obtained temporary custody of KJ. Temporary custody became permanent a few months later. This was a huge life change for me at the time because my youngest child was already 10 years old. I often say it was my life’s greatest challenge (to date) and by far my greatest reward.
Having diabetes at such a young age changes the way a child does everything. When she was first diagnosed, she had to get an insulin injection at every meal (which was every 3-4 hours) around the clock. When she was 9 months old, she started using an insulin pump. An insulin pump is like an IV with insulin in it. It stays connected to the body at all times. She also started on a Continuous Glucose Monitor which checks her blood sugar through a tiny wire inserted into the skin. This CGM sends the blood sugar readings to her insulin pump. These medical tools have become a part of her body now. Every time she eats, we have to count the carbs and put that number into the insulin pump. The pump then calculates how much insulin to give her to keep her blood sugar from going too high. Every 3 months she visits an endocrinologist and the pump settings are adjusted to help maintain healthy blood sugar readings. If her blood sugar stays high for too long, she could go blind and have other diabetes related complications. If her blood sugar gets too low, she could die. It is a fine balance to have a healthy life.
There are many different types of Monogenetic Diabetes (meaning 1 known gene caused diabetes) and many different types of Neonatal Diabetes (meaning children were diagnosed before the age of 1 year old). Genetic testing is recommended for all children diagnosed before the age of 18 months. This testing can be very expensive for families but there is one place in the United States that will complete this testing for free. The Kolver Diabetes Center found at the University of Chicago. The Kolver Diabetes Center is also a research center trying to find other ways to treat diabetes (other than with insulin) as well as causes of mutations. You can find more information about donations at https://kovlerdiabetescenter.org/about-us/donate/
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