One Family's Story
I met Deb through an online message board filled with mothers of every age. I've been a part of it since my own daughter was about a year old, that was 6 years ago now. I'd been on and off the site over the years, and the most recent event that brought me back was reading the posts of Deb about her beautiful little girl Mary Kathryn. She's let me share her words with you here.
This is so important for parents to read, but I must warn you to have tissues handy.
02/02/09 7:22 AM
She had been feeling droopy for about the last week. I thought that it was just the start of some kind of bug that was going around. But, by Saturday, she had gotten so weak that I took her to the ER. Come to find out she was a diabetic. It had come on suddenly and no one else in our family has diabetes. She had started drinking more, but I thought it was because she was just sick. They were never able to get her stabilized in the hospital and due to the fact that she was so dehydrated it caused her brain to swell and herniate. She became brain dead at that point and lost to us. My precious baby, Mary Kathryn Elizabeth, I don't know how I can make it without you!
03/12/09 7:33 AM
This is my article:
A Journey Through Grief
Losing a Child to Sudden Onset Juvenile Diabetes
If you don't have a family history of diabetes, the last thing that you, as a parent, might consider to be a childhood malady would be (SOJD), also known as Type 1 Diabetes. For 6 years, our daughter had been the picture of health. She had the normal childhood illnesses ear infections, sinus infections, stomach viruses and such nothing out of the ordinary. So, as an experienced and I thought, educated, parent of 4 children, when our daughter, the next to the youngest child in our family, started exhibiting symptoms that very closely mimicked stomach flu, an illness that our 8 year old child had a couple months earlier, it was no wonder that I didn't consider the notion that this illness was anything else. Unfortunately, it was something very sinister and deadly.
The last week of January, Mary Kathryn, our daughter, had started acting the best description would be, droopy. She just didn't seem herself, but aside from drinking more liquids, nothing seemed too out of the ordinary. After all, she was just in kindergarten a lot of other kids that I know come home from school and seem tired. Preferring to lay on the couch instead of going outside to play then too, it is January who wants to go play outside in the cold anyway? So, I didn't think too much about it.
The next day the school nurse called to say that Mary Kathryn had come to her office because her tummy was hurting. The nurse checked her temperature, which was fine. I asked her if she thought I should come and get my daughter and she didn't seem to think that was necessary. I told her about Mary Kathryn drinking more fluids and the nurse asked if we had had her blood glucose levels checked and I said no. And I asked if higher fluid intake could relate to a viral type infection and the nurse said yes. I spoke to Mary Kathryn's teacher and asked her to keep an extra close watch on Mary Kathryn and call me if she thought I needed to come and get her. The next contact that I received from her teacher was that Mary Kathryn seemed fine and to be feeling better.
On Wednesday of that week, Mary Kathryn got up feeling more sick and complained about her tummy hurting. Fearing that she had contracted a stomach virus from school, I kept her home that day. For the most part, she would rest on the couch. She ate some jello and fruit, apple and grapes, her favorites and she was drinking a lot, but she wasn't running a fever so I kept waiting for the inevitable trips to the bathroom to help her with and got the Lysol disinfectant ready.
Thursday was a repeat of Wednesday. She never vomited, but she kept complaining that her tummy didn't feel well. When I got up on Friday I thought, surely she's coming around the corner today with this sickness, but when she wasn't any better, I reminded myself that my 8 year old was sick on the couch for 5 days with the stomach flu before he finally got better, so I assumed she was going to be the same way. But on Saturday, she was so weak that I sat and held her most of the day. I gave her anything she asked for Popsicles, Coke, apples, Jello, water all in hopes that any of it would help her to start feeling better, amidst all this, almost constant trips to the bathroom. By late in the afternoon, I had gotten scared that something else was going on. She was just so incredibly weak, I knew that I had to get her to the hospital.
I arrived at Guntersville Hospital ER at around 6:30 p.m. We didn't have to wait long to be seen by the triage nurses. They asked what was going on with Mary Kathryn and I told them that she was complaining about her tummy bothering her, but she was so weak and her breathing was labored. I also told them that she had started drinking more fluids and going to the bathroom a lot. They exchanged knowing looks and ordered a blood glucose test. When the results came back, they showed that Mary Kathryn had SOJD, Type 1 Diabetes. I was shocked we didn't have a family history of diabetes. The doctor told me that didn't matter. Having a family history of diabetes only increases the risk to other family members it doesn't guarantee that if you don't have a history of diabetes that that means you're home free and can't get diabetes.
Because of the immediate medical needs of my daughter, she was transferred to Huntsville Hospital's Pediatric ICU. We arrived at that hospital by 10:30 p.m. I had to wait for an hour while the nurses and doctor got her situated in her room. By the time the doctor was ready to speak to me, my husband had also arrived at the hospital. The doctor explained that what was going on with Mary Kathryn at the moment was called Diabetic Ketoacidosis (DKA). Because Mary Kathryn's pancreas had shut down, her body had no way of making insulin, which is what the body needs in order to metabolize sugar in the body so that it can be used to fuel the cells. The only way to flush out excess glucose in the body is for fluid to bind with the glucose so that it can be flushed from the body. Which is why Mary Kathryn's thirst had increased and also why she needed to use the bathroom more. Another side effect from DKA is that the patient can't drink enough fluid that the body needs to help flush the glucose out of their system so the body also starts robbing fluids from fat tissues, muscle tissues and even the organs of the body. As it turned out, Mary Kathryn was extremely dehydrated because of her condition.
I stayed by her bed in the ICU as every intervention, on Mary Kathryn's behalf was made by the doctors and nurses. I would hold her hand and talk to her. Every time her big brown eyes would open, I would stand up next to her and tell her that I loved her. She'd ask, "When can I go home, mommy?" and I'd say "soon". The last time she opened her eyes, I stood up next to her and whispered in her ear, "Mary Kathryn, I love you" and she said, "I love you too, mommy". Those were the last words she ever spoke. She would later become unresponsive, she went into a coma, and later we found out that because she was so dehydrated and during the process of hydrating her, plus trying to stabilize her blood glucose levels, her brain swelled and herniated causing brain death. From the time I found out that my daughter was a diabetic, until the time that she died, was a period of less than 18 hours. And the medical community readily admits that first time presentations of patients suffering from Sudden Onset Juvenile Diabetes (SOJD) is commonly in a hospital ER setting to be followed up by a stay in ICU. Most patients live, but there are others, like my daughter that do not.
You might ask, "Do you blame yourself?" My honest answer would be "yes". I've tried to blame myself every way imaginable. After all, I'm a pretty educated parent, right? But, here's the sad truth, I can't even take the morbid pleasure in kicking myself because I'm an idiot, because some doctors have missed it in their patients and some of them have missed it in their own children. Well, okay I concede that I'm not as smart as a Medical Doctor, but it's my fault I should have gotten her to the hospital earlier. I am at fault there, right? You might think so, until I found out that patients have shown up at hospitals in worse shape than my daughter and with higher blood glucose levels than she did and they lived. So, I'm left with no one to blame except for the lack of information out there and the silent epidemic that no one wants to talk about.
Mary Kathryn Memories
Mary Kathryn's hugs & kisses home
03/12/09 9:28 AM
As everyone has said, this did happen so incredibly fast. But also to emphasize how deceptive this disease can be, I'll share another story from a well respected doctor in our community. He had a 12 yr old patient present to his office complaining with a sore throat. By all appearances to him, she had a sinus infection, so he gave her an RX for antibiotics and sent her home. On the following Monday, he found out that she had been admitted to the hospital over the weekend with Sudden Onset Juvenile Diabetes. Talk about someone kicking themselves...he has! He immediately went about educating himself about this horrible, insidious disease, so that in the future, hopefully, he won't make this same mistake.
Frankly, I think it all comes down to making a blood glucose test a standard protocol at the dr's office. With as many new cases of Type 1 diabetes being DX every year, it seems almost criminal to turn a blind eye to this particular "snake in the grass". Enacting this protocol would have a double benefit, 1st obviously being the patient's health in not getting into the state of DKA that Mary Kathryn experienced and 2nd, it would certainly be a lot cheaper on the Ins. companies, in that they wouldn't have to pay the high costs of ER and ICU admittances. All of this compared to the fee for a $12.00 blood test at the dr's office. Just my 2 cents worth...
03/13/09 7:33 PM
I'm sorry, but I think my experience was so unnecessary...in this day and age, it's reprehensible that the manifestation, signs and symptoms are not widely known and talked about. I was in my doctor's office last week with one of my sons and as I was waiting, I looked around at the pamphlets discussing all types of health issues...Type 2 Diabetes being one of them, but there was no pamphlet about Type 1 Diabetes. Is that crazy or what? This is the proverbial "snake in the grass" and we're pretending it's not even there...
"Juvenile Diabetes can mimic other common childhood illnesses, so it's very important to pay attention to the symptoms that your child is exhibiting."
03/27/09 1:17 PM
Education and Vigilance Needed for Juvenile Diabetes
Let's get educated. Unfortunately, Juvenile Diabetes can mimic other common childhood illnesses, so it's very important to pay attention to the symptoms that your child is exhibiting. If your child exhibits any of these symptoms do not hesitate to take them to your doctor.
Recognized Signs and Symptoms of Juvenile Diabetes
* Rapid Weight Loss - is often the most noticeable symptom.
* Extreme thirst - is not unusual in children, especially in warm weather. Also, once children are old enough and tall enough get water themselves it can be difficult to monitor their fluid intake.
* Frequent urination - this becomes more obvious to parents if traveling with children, but just around the home it can be difficult to spot.
* Eye Sight or Vision Changes - should not be attributed to too much time in front of the television or computer screen.
* Sweet smelling breath - may be noticed by parents, but can just as easily be attributed to something the child has eaten.
* Increased appetites - may be evident, but of course children are growing and can have large appetites.
* Lack of energy or even drowsiness - unless excessive, may go unnoticed. Many children now lead very sedentary lifestyles and lethargy may simply not be noticed.
* Heavy, labored breathing - another symptom which can be masked by any number of respiratory problems which seem to be more prevalent in children (i.e. asthma).
In this busy life that we lead, we have to be aware of what is "normal" for our child. Does the child typically rest or seem tired during the day? Do they normally drink a lot, or is this something new? Is the child dieting and purposely trying to lose weight? This is where parental vigilance comes into play. Don't just dismiss unusual behaviors as simply a child being a child.
The doctor that treated our daughter told us that Mary Kathryn had been having difficulty for 3 months. The doctor could tell this by some of the tests that she had performed. Upon reflection, after the doctor revealed that information to us, I could remember that Mary Kathryn had started drinking more during that time frame. Not substantially more, but just enough for me to notice and dismiss it as something that wasn't alarming. After all, I usually sip on something frequently throughout the day so I thought she was going to be like me.
In Juvenile Diabetes, there DOES NOT have to be a family history of the disease. It strikes suddenly and without apparent warning. However, once there is a diagnosis of Juvenile Diabetes in a family, the risk to other siblings is increased and those children should be monitored.
Within a few weeks of Mary Kathryn's death, I had purchased a Glucometer, the blood test strips and Ketone Urinalysis strips to have on hand. I purchased all of these items at WalMart for just under $50. None of the items require a prescription. I've tested our whole family and will continue to do so, because you just don't know. You can also have your doctor perform this test in his office. It's quick and inexpensive and will let you know almost immediately if there is a problem.
Education is our only weapon in combating this disease. It is so important that we try to bring about a change in how this illness is diagnosed. With all the medical advances that have been made in the world, it is unfathomable to me that there is not a more proactive way to combat this illness. Whether it's a need for more information in the doctors offices or mandated blood tests to help with early diagnosis I don't have the answer. All I do know is, that not so much as a whisper about Juvenile Diabetes, the signs or symptoms of this disease, has ever mentioned to me during routine doctor visits or at any other time. I was aware of other kids having Juvenile Diabetes, but I assumed it was because one of the parents had the disease or there was a family history of it somewhere in their family. Obviously, it was just a lack of education on my part.
It's my hope that this article will further help educate parents about this disease. In the end as parents, our most precious gift is our children. Our wealth is not in the amount of money we have or our possessions, it's in the lives of the children with which we've been entrusted. Whether they're our own children or those that we've been fortunate enough to have been allowed the time to share in their lives, children mold us every bit as much as we try to mold them and they leave an indelible mark on our lives that will forever remain.
Please Print and Share!
Click on the image below to open the 8 1/2" x 11" document ready for printing.
Related Websites
- Children with Diabetes Forums
- The online community for kids, families and adults with diabetes.
- Juvenile Diabetes Research Foundation International
- The mission of JDRF is to find a cure for diabetes and its complications. It is the largest charitable funder and advocate of diabetes research worldwide.
- The Faustman Lab at Mass General
- Current research focuses on uncovering new treatments for type 1 diabetes.
- Mobile Type 1 Diabetes Help
- Type 1 Juvenile Diabetes resource designed for mobile users. Access important information for type 1 diabetics 24/7 on your phone. Find out tips on coping with type 1 low blood sugars or type 1 high blood sugars. Find out important differences between type 1 diabetes and type 2 diabetes.
Required Reading for Parents
The Everything Parent's Guide To Children With Juvenile Diabetes: Reassuring Advice for Managing Symptoms and Raising a Happy, Healthy Child (Everything: Parenting and Family)
Amazon Price: $10.17 (as of 11/09/2009)
List Price: $14.95
Avg. Customer Rating: 
The Latest News on Juvenile Diabetes Research
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- ... and Disease Group and the Las Vegas chapter of the Juvenile Diabetes Research Foundation will host events for Diabetes Awareness Week through Nov. 14. ...
Share Your Story
Or, leave a note for Deb. I'll make sure she sees it.
Michelle wrote
This is such a tragedy. Has anyone connected vaccinations or dairy to all of this? Just curious. I think it needs to be looked into.
Posted November 09, 2009
HERBMASTER wrote...
Great lens! I am more focussed on Type II Diabetes but there are some answers for Type I in Chinese Med that may interest you. We might share together what each other is finding in the research and benefits to improve our service here to sufferers. Keep up the good work, its needed! Mark
Posted November 07, 2009
MaryKathrynsmom wrote...
in reply to jeffwend Jeff, pass our story on to everyone that you know...with incidences of this disease on the increase, it is truly a travesty that there is not a more proactive education initiative out there for the public. You can hear and see ads on Type 2 every single day...multiple times. Why not for T1??? If there had been more emphasis on educating the public about T1, our situation might have turned out differently.
Posted November 04, 2009
jeffwend wrote...
What a tragic true life tale of this terrible disease. I am diabetic too but I found out in my 20's. I am very sorry for your loss. Thank you for sharing and helping to educate others.
Posted October 29, 2009
Betty Mother of Justin Type 1 diabetic wrote
Marykathrynsmom,
I am so sorry for you loss. Your story hits so close to home and put into words for me just how fortunate we are to still have Justin in our lives. Thank you so much for sharing your story and putting light on this silent disease. God bless you and your family.
Posted October 04, 2009
Shannon wrote
I want to thank you for posting your story. I am a mother of 5 and my second to the youngest was just diagnosed withType 1 diabetes. I noticed over the past 2-3 weeks that she was drinking more than normal and making several trips to the bathroom. I decided to make a doctors appointment as my research led me to believe that she did have Type 1 diabetes and I wanted to have an accurate diagnosis. I apprediate your information and i will make sure that I pass it along to all of my friends, coworkers, and anyone else that will take it so that everyone can become more educated. I am truly sorry for your loss and thank you for your efforts to help so many of us out there that are overhwhelmed with this.
God bless you!
Posted October 02, 2009
MaryKathrynsmom wrote...
in reply to Lyn Hi Lyn! We're coping...the days do get easier, but not one day goes by that I don't think about my girl and miss her. I was sitting in the choir loft at church yesterday (I sing in the choir) and the pastor called for the children to come forward for children's minute. I actually gasped when I saw this one little girl run forward, hair streaming behind her. In that instant she so looked like MK...it made me miss her more. I'm sure there will be more days like that for me. MK's b'day is coming up in Nov. I so dread that day, but I think I've finally come up with what to do. We're going to have a memory party...and share all of our fondest memories of our precious angel. And the tears will flow anew...I am sure. {{{hugs}}} to you this day and
~Peace
Posted September 28, 2009
Lyn wrote
in reply to MaryKathrynsmom Hi Deb..hope you and yours are holding up thru these still difficult times.We're moving closer to Danny's 6 month angelversary,getting us thru the holidays will be the hardest.I'm going to "borrow" your fliers for the Ped's office as well as the school nurse's offices.Danny was many years older so when I'm done with his I'll drop them off at the High schools and his Dr's office.Last week I mentioned during a "pink eye" visit for my youngest son that there still was no info on T1 anywhere..I swear they looked at me like I had 2 heads{{hugs}}Lyn
Posted September 19, 2009
MaryKathrynsmom wrote...
in reply to Tianna My prayers are with your niece and family. Hopefully she'll stabilize soon and adjust to her diagnosis. Please pass this site along to everyone that you know. Education is the key to making people and quite obviously doctors aware of this illness. My prayers are with you for your daughter as well, that she doesn't have JD or develops the disease.
~Peace
Posted September 09, 2009
Tianna wrote
THAT IS SO SAD I AM VERY SORRY MY DAUGHTER WHO IS 2 AND HER COUSIN WHO IS 2 1/2 WE FOUND OUT LAST NIGHT THAT HER COUSIN HAS TYPE 1 AND IS IN ICU RIGHT NOW HER MOM HAS BEEN TAKING YOU TO THE DR ONCE A WEEK FOR THE PAST MONTH AND THEY SAID IT IS JUST A BUG.. THEN NIGHT BEFOR LAST SHE GOT UP TO GO TO THE BATHROOM AND FELL DOWN THEY TOOK HER TO THE ER RIGHT AWAY THE R TOLD HER THAT IF THEY HAD WAITED ANYLONGER THEAT SHE WOULD HAD DIED...SHE HAD ALL THE SYMPTOMS ALWAYS THURSTY AND ENERGY LOSE OF WEIGHT BUT STILL THE DR SAID IT WAS A BUG.. BUT I AM TAKING MY DAUGHTER TODAY AND GETTING CHECKED OUT.... THANK YOU.. FOR ALL YOUR INFORMATION....GOD BLESS
Posted September 08, 2009
MaryKathrynsmom wrote...
in reply to Angela Kohrs I'm not surprised that you haven't seen information about T1 at the Drs office. We never did and it's still not there or I can say wasn't, now my information poster is. They've been placed there and will be at our school too. Thank you for any help that you can give. Please just never forget about what happened to us and never take any of these signs for granted...it's far better to err on the side of caution.
~Peace
Posted August 20, 2009
Angela Kohrs wrote
Oh my how I cried reading about your little girl. My heart goes out to you! I received your story via email from my sister who is type 1, and her little girl is type 1. I have a 13 month old, and this is something always in the back of my mind and it is very scary. I will send your story to everyone I know, my sister emailed it to A LOT of people. I am also going to take the print out you made to my daughters pediatricians office...thank you for that, it is really nice to have this as a reference! After reading your story, I realized I don't remember seeing anything there about type 1 diabetes in the pediatricians office!
Posted August 19, 2009
a_willow wrote...
So sad story. As a mother of 2 year old girl, I can't even start to imagine my life without her. Or want. No words can make things right here. But I'm glad you decided to share your story and make people more aware of this disease. Blessings to you and your family.
Posted August 16, 2009
MaryKathrynsmom wrote...
The blood glucose test is done in the office and you should have the result in just a few minutes. Thank you for your kind thoughts and your prayers...yes I know my angel is watching over us all...and I do live for her. {{{hugs}} to you today...and please let me know how your dr visit goes.
~Deb
Posted August 13, 2009
Mandy wrote
in reply to MaryKathrynsmom thanks a lot. it is good to talk. will the doc perform the test in his office or send it to the lab? answer right after test? hope! he also got lots of diarhea last few months and lots of diaper rash and we couldnt get rid of this. we found out so far that he makes very soft poop after he eat something with sugar like ice pop (even its made of natural fruit and no preserv.or fructose). i always think about your daughter and it makes me very aware. thank you so much for sharing your story. and i hope your little angel will help so many children. i know she will, she is always with us, right? my dad died on cancer in 2002 - and i strongly believe that he always watches over me and my family. so does your little angel. our hearts are with you and your family. i know it is hard and you will never get over it, but you live for her, right? always. and please dont feel guilty, it was not your fault.she is with god now.hugs to you too.
Posted August 12, 2009
MaryKathrynsmom wrote...
in reply to Mandy I would request a blood glucose test at the drs office. They're not expensive and if nothing else, it will relieve your mind. I wouldn't take no for an answer! Good luck and I certainly hope that your child doesn't have Type 1, but it's not worth risking his health by allowing the drs to keep their heads stuck in the sand. Please come back and let us know how everything turns out...you and your little boy will be in my thoughts and prayers. {{{hugs}}}
~Deb
Posted August 12, 2009
Mandy wrote
i have an almost 2 year old boy, he is my 2nd one. since he was born he drunk a lot and i mean a lot of milk since today (some days around 6 bottles soy milk - his favorite!). and the first months after his birth he wet around 15-22 diapers a day. doctors said it is normal, good sign that he drinks enough. couple of days ago i saw he had cracked skin on th inside of his hands (peels off) and on the bottom of his feet espe.the toes, the big toe so cracked that he has 2 deep cuts with blood. i cream that now. and he is always thirsty since he was born. and most of the times he wants milk. he cant speak very well but he can cleary make me know he wants milk. and he has a not normal smell like sweet.maybe from the perci but it is different. and the last weeks he seems to be more tired but is also very active. otherwise he is strong and tall,normal. could that be diab.type 1 too? will check with the doc tomorrow.any advise?
Posted August 12, 2009
MaryKathrynsmom wrote...
in reply to Nora I am so saddened by your story too. The loss of a child, no matter the age, is a horrendous and totally unnatural event. You have my prayers...{{{hugs}}} God bless you and give you peace.
~Deb
Posted August 11, 2009
Nora wrote
Oh, how I cried when I read your story. I am the mother of 2 - Type 1 diabetics. They were diagnosed when they were 3 and 10 years old. I lost my oldest son last year due to complications from diabetes. He was only 31, but had lived with this wretched disease for 21 years. He didn't have medical insurance and therefore was not able to go to the doctor as often as he should have. He died suddenly of a massive heart attack. I live in fear of what's in store for my youngest son. He just went on the pump last fall and loves it. It gives him so much more freedom. My late husband and I used to pray to God for him to take it away from our sons and give it to us- if the disease has to be. We would have gladly taken their shots and blood tests if only we could. Only the child, parents and the Lord know what they go through. I continue to pray for a cure all of the time.
Posted August 11, 2009
P.S. If you buy something from this page...
... you'll automatically be making a donation to the Juvenile Diabetes Research Foundation International.Doesn't that feel good?
Or, make a donation to them directly.
JDRF is the leading charitable funder and advocate of type 1 (juvenile) diabetes research worldwide. The mission of JDRF is to find a cure for diabetes and its complications through the support of research.
"Last week I searched the web looking for a clue as to why my daughter was drinking so much, losing weight and suddenly had become so weak. I read your blog and immediatly took my child to the ER where she was in severe ketoacidosis with a blood glucose of 513. THANK YOU< THANK YOU. You saved her life."
-carolyn s
Posted in guestbook July 12, 2009
This Lens is Dedicated to Mary Kathryn
Photo: Mary Kathryn with her brothers Chris, Alex, & Patrick.
