ONE day I would love to say I used to have DIABETES
Putting an end to T1D, one step at a time
February 21st is a day our family will never forget. It was on this day in 2014 that Shanley was diagnosed at the age of 2 with type 1 diabetes (T1D) and thus began our new "norm".
T1D is an autoimmune disease in which a person’s pancreas stops producing insulin – a hormone essential to turning food into energy. It strikes both children and adults and is unrelated to diet and lifestyle.
People often ask, "how did you know, what happened?" This is Shanley's Story:
In the first week of February 2014 Shanley got sick like any 2 year old would in a Minnesota winter. Her cold then turned into a rash all over her body. She was diagnosed with Scarlet Fever and put on Amoxicillin. She didn't seem to be getting any better so back to the Pediatrician we went. This time she was diagnosed with a double ear infection and pneumonia and was put on a different medication and back home we went. It was within days when Shanley's condition took a turn for the worse. She began throwing up constantly and became so weak she was unable to get out of bed or off the couch without help and eventually she became unable to walk on her own. Now throughout all of this, we noticed Shanley was very thirsty ALL THE TIME. She would even wake up at night every hour and chug a thermos of water and go to the bathroom. We thought it was because she was sick and her body was dehydrated. This brings us to Friday, February 21, 2014. It happened to be the weekend of the JDRF OneWalk at the Mall of America. We had made a donation to our neighbor, Nathan Buckley, who has T1D. That day I also recalled something my Mother said over the summer about how frequent urination can be a sign of diabetes. I knew something was very wrong with Shanley and we could not go through the weekend without getting to the bottom of it. So call it a hunch or "mother's intuition", I Googled signs of T1D. Heavy thirst, YES; frequent urination, YES; vomiting, YES; fatigue, YES; increased hunger especially after eating, YES; unexplained weight loss even though your eating, YES; fruity smell to your breath, YES. I continued reading what these signs could mean for Shanley and I immediately called the Pediatrician and demanded they see her that day. You see, what I learned since then about those signs was that Shanley was experiencing Diabetic Ketoacidosis...her body was shutting down. I often wonder what would have happened to Shanley had I not gone with my gut and brought her back into the Pediatrician and asked them to check her for T1D. I can still see the look on the Doctor's face when she told me, "I am sorry to tell you this, but Shanley has type 1 diabetes and you need to get to the emergency room immediately...I have already called them to alert them you are on your way." That was the longest drive of my life.
The rest of the weekend was spent in the Hospital. There were a lot of tears, a lot of questions and A LOT OF INFORMATION. I wish I could tell you that it gets easier, but it never gets easier, we just get better at living with it!
T1D is on our minds every second of every day...Shanley's life depends on it. The insulin she takes gives her the gift of life each day, but that same insulin also has the power to take it away.
Shanley's T1D is managed using an insulin pump with a glucose sensor that she is connected to 24 hours a day. Although the pump and sensor has given Shanley more "freedom", it still comes with its challenges, concerns and discomforts. We still deal with the daily high and low blood sugars, we still have to check her blood sugars at least 8 times a day (including at night when she is sleeping) and we still have to count carbohydrates and give the proper dosing of insulin for everything she eats or drinks. She is not able to go to a friend's house for play dates, sleepovers or birthday parties without Mom or Dad taging along to care for her. It is donations like yours that will one day truly allow Shanley to be "free"!
Shanley is a 1st grader this year at Ramalynn Montessori Academy in Bloomington. She participates in gymnastics in the fall, hockey in the winter and softball in the summer. She also loves to swim and dance. Her favorite show is a toss up between America's Got Talent and American Ninja Warrior.
Despite the challenges she faces everyday because of this disease, Shanley does not let it stop her from doing what she wants. In the Murphy House..."CAN'T" isn't a word. It is this type of strength and determination in Shanley that will beat T1D!
A special thank you to our family and friends, the staff at the McNeely Diabetes Center in St. Paul, Shanley's teachers, Ms. Cassy and Ms. Alyssa, who have gone above and beyond to care for Shanley in school. Their support and acceptance has been the strength and encouragement we need to keep going.
With T1D there are no days off, and there is no cure – yet. Your support of JDRF can help change that. By donating or joining our team today, you can help JDRF fund research that impacts the lives of the millions of children, adults, and families challenged by T1D every single day. With your support, we will turn Type One into Type None.
Together, our team is walking to create a world without type 1 diabetes (T1D). If you would like to walk with us on February 24th at the Mall of America, please register to join Team Sugar Shay and meet us at 8:15am at Kids Footlocker on the East Side, 2nd Floor. Please wear purple...Shanley's favorite color!
This is a day that Shanley looks forward to all year. We are so grateful to all those that walked with us last year. Please help us grow the number of people walking for Team Sugar Shay and really bring awareness to T1D.
"WE THOUGHT WE WOULD HAVE TO TEACH OUR CHILD ABOUT THE WORLD...TURNS OUT WE HAVE TO TEACH THE WORLD ABOUT OUR CHILD"
Your donation will count towards the team's fundraising total. In addition, please give credit to the person that asked for your support to recognize them for their efforts in creating a world without type 1 diabetes (T1D).