Dear Becky and Danielle,
You have never known me without Type 1 diabetes because I was diagnosed before you were born and certainly before you married my sons. You may have seen me test my blood sugar and push buttons on my pump to take an insulin dose. You have never seen me incapacitated or ill as a result of diabetes and it is possible that you come away from my story without understanding how serious and deadly Type 1 diabetes can be. Very naively I never worried that your husbands/my sons would get Type 1 and so far they haven’t. I pray that your children/my grandchildren never get diabetes, but if they do, you will manage and they will be fine.
Today I have information that I want you to share with you. Last weekend, two young children died because of Type 1 Diabetes. These were not children without access to medical care. They could have been your child or your neighbor’s child. One of these children was incorrectly diagnosed by her doctor. A simple blood test with a $1 test strip or a urine dipstick test could have diagnosed Type 1 diabetes in 5 seconds and saved her life. The second child was diagnosed correctly in the emergency room. Despite state-of-the-art medical care, he died a few days later.
Five-year old Kycie became ill one Sunday in late January, 2015. Initially her parents thought she had the flu and a Wednesday visit to the child’s doctor resulted in antibiotics for strep throat. She went to the doctor again on Friday and to the ER that afternoon. A series of seizures resulted in extensive brain damage. Tens of thousands of people followed Kycie’s story on Facebook as she and her family battled for 6 months to save her life. On Saturday, July 11, Kycie passed away at home in the arms of her parents.
A shorter story, but just as heartbreaking, is that of David Michael Brown who died in a pediatric ICU at age four last Sunday, July 12. David became ill midweek with what appeared to be the flu. When his symptoms became more severe, his parents took him to the ER where he was correctly diagnosed with Type 1 diabetes. Intensive medical care could not save his life and within a few days, David lost his battle with diabetic ketoacidosis as a result of multiple organ failure.
I urge you to learn the symptoms of Type 1 diabetes as shown in the poster below and explore the Test One Drop website. I also suggest that you like the Test One Drop Facebook page. The mission of this organization is to
“bring awareness to the general public and the medical community of the similarities between the symptoms of Type 1 Diabetes (T1D) and common illnesses such as influenza, strep, and viral infections with the purpose of stopping delayed and misdiagnosed T1D which can lead to life-threatening DKA, permanent handicap, or death. Additionally, we are seeking a change in the Standard of Care Practices to require medical personnel to screen blood or urine samples for glucose levels before diagnosing sick patients with a common illness that might be masking or mimicking Type 1 Diabetes.”
My wonderful daughters-in-law — although your children are at a somewhat higher risk of getting Type 1 diabetes because of my diabetes, most diagnoses are of children and adults with no family history. The causes of the autoimmune beta cell destruction resulting in Type 1 diabetes are not known. For unknown reasons the incidence of Type 1 is increasing worldwide. Although this post highlights the stories of two children, please remember that Type 1 diabetes can strike at any age from infants to senior citizens and these symptoms should not be ignored in adults.
Share this message with your friends, family, and acquaintances. Educate your schools and daycare. Print out the free poster from the Test One Drop website and ask your pediatrician whether they test the blood sugar of children at well-child visits and whenever they have flu-like symptoms.
Although there is nothing easy about living with Type 1 diabetes, I am one of many people who illustrates that you can have a wonderful life with and despite diabetes. You, my sons, and your children are proof of that.
Throughout my 38 years of Type 1, I have seen incredible improvements in insulin and technology that make living with this condition more manageable. Two things have not changed. Type 1 diabetes is a death sentence if it is not diagnosed. And even with proper medical care, Type 1 diabetes is a serious and life-threatening illness.
With love as always,
Laddie, your Mother-in-law
Please note that this blogpost was edited in November 2015 to reflect a correction in David Michael Brown’s story. My understanding from Facebook stories in July was that an incorrect diagnosis had led to a delay in care for David. That was not the case and he was diagnosed correctly. But even with appropriate and intensive medical care, David lost his life as a result of Type 1 diabetes.
I have also updated the Test One Drop mission statement and displayed the current version of the free downloadable poster.
Test Guess and Go 
So very sad that in this day and age, Type 1 goes undetected in children! I was diagnosed at age 15 in 1970. I had lost weight and had alot of textbook symptoms of T1D. Thank God my doctor had the knowledge and presence of mind to dip stick my urine. We don’t live in a third world country and our doctors need to be more aware. Children matter.
You’re absolutely right, Susan!
Why, oh why does it take tragedy to get this message out? It’s great that there’s a lot of noise being made now, but I fear that in six months it will all be forgotten again. I really do.
(This is not a comment to your post per se, but just the thoughts that came to my mind as I read it. I hope Becky and Danielle DO read this and take it to heart because what w really need to do is get this message OUTSIDE of the diabetes community. And you did a great job in writing it).
Thanks, Scott. You’re right that these stories will be forgotten. in the meantime, many people will have learned about T1 and if we save one child, our efforts have been worthwhile.
Thank you for sharing these horrifyingly sad stories with your daughter-in-laws, and to us. I have shared this on my facebook. Like Scott said, these stories will be sadly forgotten, but hopefully enough will be remembered. Holding you and yours in my thoughts.
I wish there was a way to get this post to every single parent. And to those who aren’t parents too.
You’re so right, Karen. But just as importantly, we need doctors to be aware also.
Thanks for writing about this, Laddie. I hadn’t known about these two recent tragic stories.
Your post made me realize how INCREDIBLY lucky we are to have had an intelligent and informed doctor back in 1974 when my husband and I (both university graduates with advanced degrees) knew absolutely nothing about the symptoms of undiagnosed diabetes because none of our relatives or friends had diabetes.
Our then probably 19-month-old baby had developed a terrible diaper rash, was constantly asking to drink water, and to eat ice cream. After trying to treat his diaper rash for several days (or weeks?) and not noticing how much more urine he was producing than usual since he was still in diapers, I finally made an appointment with our pediatrician about the diaper rash.
The doctor took one look at our son’s bottom and said, “He’s the picture of health, looks just like a little linebacker [he was a little bit chunky], but just to be safe, we’d better check him for diabetes.” I didn’t even knew what diabetes was, or that he had all the symptoms (rash in the genital area from the sugar in the urine, insatiable thirst, constant urination)..
A few hours later the doctor called and said that our baby’s blood sugar was sky-high and to bring him to the hospital immediately. When we got there in total shock about an hour later, the doctor met us and said our son’s blood sugar was over 800 and that he was “definitely ketotic” (i.e., suffering from diabetic ketoacidosis, exactly what killed the two children you wrote about).
The rest is history. He was 20 months old that fateful day, and this Saturday will be his 43rd birthday.
Your posting reminded me how lucky we were to have the doctor we had so long ago.
Like your son, Carol, I was diagnosed in the 1970’s and seemingly got better care than some people today. I give prayers of thanks for my diagnosis and that of your son.
Laddie, thank you for this. Just, thank you.
So touching, Laddie, and it needed to be said.
Laddie, thank you for sharing Test One Drop. Our daughter was DX at age six, 20 years ago. Our daughter-in-law was DX in college 10 years ago. (Her dad and aunt have it, too! As well, as my deceased father-in-law!!!) We, too, are hoping our grandbabies do not develop T1D. Our third was born just two weeks ago. 🙂 Anyway, I want to invite you and your readers to join our Facebook page, if you haven’t. I am going to post this blog post there. Also, in May, I began another Facebook group called UP Rising Against DKA. It is a very focused group in which we are discussing and implementing Ideas to change legislation and protocol. We encourage everyone with a true passion to Stop DKA at T1D onset to join the UP Rising!!! (UP Rising Against DKA = United Parents Rising Against Diabetic Ketoacidosis) Please check it out and invite your readers. 💙 Here are the links: fb.me/testonedrop and <www.facebook.com/groups/1594396390844304
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I followed Kycie’s story and it was so sad! I agree with all the comments above that it’s a shame T1D goes undetected in today’s world. When I first started reading this post I asked myself if I will write a letter like this in the future to my potential Daughters-in-law. My little guy isn’t even 1 yet but one day he will hopefully find someone to make him happy and I could see myself sharing this post with her! But the in-law letter aside, it is so important that any parent gets this message and I hope doctors are better able to educate parents going forward. So heartbreaking for the two families!