Meet Alison

My name is Alison Sharkey-Hines, and I was diagnosed with type 1 diabetes at age 11. Shortly after being diagnosed, I dove into the diabetes community. My pediatrician referred to me as “His Star Diabetic.” It was a title I wore proudly. I participated in youth groups, attended camps, and even spoke on panels. I did everything I could in the diabetic community because it gave me the hope and strength I needed. As time went on and I grew older, life became more demanding, and I wasn’t able to dedicate as much time to the community as I had in the past. My extra curriculars in the diabetes community came to a halt. I was still able to maintain relationships with my dia-buddies, but that became my only involvement. 

At age 21, I married my best friend and high school sweetheart. Shortly after, he was diagnosed with type 1 diabetes as well. We both managed to stay afloat, but neither took the care we truly needed. We attempted to grow our little family, but we were met with loss. Soon, our grief would be met with a great blessing, our beautiful blue-eyed daughter, Dante. We were absolutely thrilled that we were starting to make progress towards our dreams of an abundant family. 

As Dante grew older, we became ready to work towards growing our little family. We tried and tried, and though the process brought us continued grief, we were blessed with another rainbow, Kilian. 

My pregnancy with Kilian was when I learned the most about my diabetes and self. During this pregnancy, I had begun to ration my insulin. My insulin alone cost $100-$150 a month. When I started rationing, I was trying to switch to an insulin pump for better control. This was all very costly, and with switching to an insulin pump, I would need more insulin. My husband and I were both rationing our insulin because the growing price tag of taking proper care of our diabetes became unaffordable for my husband and me. My blood sugar was not regulated well. 

I went in for my anatomy scan at the 20-week gestation mark. I was filled with anticipation to find out if Dante would be getting a little brother or sister. Instead, we were given life-changing news. Kilian was diagnosed with hypoplastic left heart syndrome (HLHS-underdeveloped left ventricle) and heterotaxy syndrome. Heterotaxy syndrome affects the placement and presence of organs. 

The coming weeks were filled with dread. Though the news for Kilian continued to get worse, I tried my best to remain positive and hopeful. My husband and I were bound and determined to do everything we could for our baby boy. We visited many avenues, one being genetic testing. The results came back, and we found out the root of the issue was not inherited, but probably the result of the high blood sugars.

I call Montana my home. Our rural state may be beautiful, but it doesn’t have access to the care that Kilian and I needed at the final stretch of my pregnancy. I had to temporarily relocate to Colorado. My husband was fortunate enough to be able to join me for Kilian’s arrival, but due to the pandemic, Dante had to stay in Montana with family. 

Our warrior was born prematurely on October 24, 2020, weighing a whopping 8 lbs. 5 oz. He had no gall bladder or spleen, a midline liver, a right-sided stomach, and HLHS. Kilian’s medical team was one of the best in the region, and I am forever thankful for them. Despite all their efforts, Kilian did not respond to treatment. There was even concern more abnormalities were present, but the team was unable to further diagnose due to Kilian’s condition.

Kilian lived to be two weeks old before he passed away in my arms. My son is a fighter. Kilian’s time with us was short-lived, but he has left behind a huge impact on our family and community. My husband and I fought alongside Kilian until the very end. Kilian’s passing was not the end of our story. We continue to march on and proudly share our story to spread awareness about the high cost of insulin. We strongly advocate for the movement to cap the cost of insulin. I have testified with the legislature here in Montana, and after our second attempt, we capped the cost of insulin to $35 a month with insurance. The access of affordable insulin is a necessity, and had it been in place prior, I’d be practicing ABC’s with my toddler instead of writing this post.