Little Kycie Changed the World. Period.

KycieAs most of you know by now, Little Kycie has lost her battle.  In a statement released by her family:
Her mission on this earth was complete.  We have found inspiration and strength from her courage.  We are thankful for the last 5 months that she was able to be home with her family and at the same time change the world.—The Terry Family.

I was in my hotel room when I heard.  I cried.  You may have cried also.  I know in all my heart and soul that Kycie, Little Reegan, and others will change this world—-our world.  They have changed it already.  They have saved lives already.  They will continue to do so.

I have just a few thoughts today, but mostly I would ask that you hold the Terry family up in prayers; they need our prayers right now.

First and foremost, our deepest condolences to a family that has acted with the most amount of grace, respect, and in manner that has captured all of our hearts.  Their grief now must be insurmountable.

There is much more I want to say and will say……..but I will not do it today.  This week is for prayers, thoughts, and holding up a family that has meant so much to all of us and who have inspired all of us beyond measure.

As I read the posts over the last two days, I wanted to share something that Kycie’s Dad shared with me while they were going through everything that they were going through.  He wanted Kycie’s story told but it was very clear that they wanted her story to be uplifting and educational without pointing blame.  We need to give their family the respect of acting as they have wished.

Action?  There will be plenty of time for action but I wanted to share what Josh shared with me a little while back.   They have opened their story for us to watch unfold.  They have shared their hearts.  Let’s remember what thy have asked of us as well as we all move forward to try to change in honor and memory of the Reegans and Kycies of this world

Within the last few weeks, I was asked and accepted, being the Keynote speaker at the National Association of School Nurses in Philadelphia.  I was discussing A Child’s Cry for Change (addressing the very issue of making sure a T1 diagnosis is not missed).  I stated to the audience, telling Reegan’s and Kycie’s stories and so many like them with Josh’s request in my mind, that this is not anyone’s fault but it has become everyone’s responsibility to change it to make sure that it doesn’t happen again.  The school nurses agreed.

The second thing I want to share with you today is about Deborah.  Deborah lives in Pennsylvania and she is meeting with her Elected Representative today.  She is meeting to tell her story today, and she will also tell Kycie’s story and Reegan’s story as well……, hopefully, make much needed changes.

We will talk much more about this up-coming but I felt compelled to share a few thoughts today.  May Kycie’s family find some sort of peace as they learn to cope with the journey ahead of them.  May we learn and accept what we each must do individually to move this process forward.  May we each hug our own children just a little tighter today.

I am a diabetes dad.
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8 replies on “Little Kycie Changed the World. Period.”

I absolutely agree Tom. It’s not about finger-pointing, it’s about raising awareness and getting doctors and other medical professionals to THINK TYPE ONE as a possibility. I keep hearing that doctors often tell parents, “It’s not diabetes. I wouldn’t even think it’s diabetes.” That is the problem. It’s not on their radar for some reason and therefore it is entirely missed. I so appreciate you and all of your efforts to help change the world. Together, we are stronger and we will create a world without diabetes.

Another great article. So on point. It’s not about blaming. It’s about enough is enough with undiagnosed/misdiagnosed leading to everything from minor complications for some and sadly to loss of life for others. When I spoke to Josh Terry in March he indicated a strong desire to help make and create change. At the time he (we) were all unsure of what the process needed to be and where / how to begin. So many questions and concerns about the right plan of action. But as you stated action will take place in due time. For now we mourn the loss of sweet Kycie and now David and all the children who did not get properly diagnosed in a timely fashion or misdiagnosed due to such little awareness and information about signs and symptoms both publicly and in the world of medicine. Along with unfortunately T1D mimicking other Types of illnesses making it presently challenging for some Doctors to be able to diagnose. Rest in peace Kycie. Rest in peace David. Your families are in my thoughts and prayers. I know the world of T1D will change not only for you but because of you and your meaningful lives. Thanks for your writings Tom.

It needs to be done! I had my daughter at the pediatrician two/three times, once she even collapsed on their floor and they still let her go home. The morning I decided to take her to the ER where she was later admitted to the PICU one of the Docs said if I didn’t wake her up and bring her in she wouldn’t be here right now. As a parent you think your pediatricians are educated enough to care for your child in a manner that they cover all the possibilities, not once did they check her urine, not once did they even suggest it was T1, it was always a stomach virus because she had just started preschool!!! I pray for these families and I pray something is changed so no one else has to lose a child or hear the words your child wouldn’t be here if you didn’t wake them and bring them in. Please let me know how I can help. I will never stop praying until something is changed! Breaks my heart!

My 16 yo dd and I followed this family over the past 5 months and we both cried as we read the news Saturday night. I can’t imagine anyone blaming this family! When my daughter was diagnosed I did not know the signs. The medical community and the public needs to be educated, children should not be dying because doctors are ignorant.

I work in the veterinary field. My saying always goes like this: If it barks like a dog, wags like a dog, it’s a dog. If it meows like a cat, hisses like a cat, it’s a cat. If it barks like a dog and hisses like a cat, it’s a zebra. I know this sounds funny, but it leads me to this. Doctors of all kinds are taught and trained to diagnose certain things. They have patient after patient usually presenting with those certain things. It is very rare to see a “zebra”. Years of medical school taught from books written years ago then trained by fellow doctors that were taught with books written years before that often leads to stagnant repetition in treatment. Relatively speaking, doctors in the last 15 years would never jump to the doagnosis that is type 1. That would be a “zebra”. Now, with all that rambling, here is my point: Start with the schools. Make sure they are on top of the epidemic plaguing our children. They cannot be held responsible for something they are not aware of. It is our job as a community to release this information. I talk with doctors of all kinds daily. I have taught our peditrician more about diabetes in one year then he has known in 25 years of practice. He is amazed and intrigued. Talk to as many doctors you encounter including your cardiologist, gynecologist, oncologist, proctologist, the nurses, receptionists, etc….they all talk to each other. This is how knowledge is spread and knowledge os power.

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