Tag: children with diabetes

I AM SO ANGRY.  She is gone.  It happened in 2012.  Now a Medical Practitioners Tribunal Service in Manchester, UK, is hearing the case to see what can be done about it.  Claire Taylor was a talented dancer and baker who wanted a career as a dietitian as her older brother Andrew had Type 1 diabetes.  Even with this knowledge, her diagnosis was missed being sick for up to two months prior to her death.

Read the entire story here.

What will it take for us, here in America to realize THAT THIS IS A PROBLEM here as well?  On a day I read that d-mom Debbie George was hugely successful in California with a Resolution passed 38-0 for better diabetes education; I’m reminded that too many do not find this subject important enough to tackle.

I plead with you,  Be in contact with anyone and everyone you know in this diabetes world.  We have an ADA conference approaching and an AADE conference approaching……please organize a group of people in the same room to discuss, at least, the missed diagnosis of T1D.  Even if we do not come up with solutions……please let’s just not talk about it thinking it will just ‘go away’.   It will not.

I have hugged parents who have lost their child needlessly. I have talked to top professionals in this field who say that diagnosis of T1D upon DKA is rising.  We pride ourselves in America as being leaders——PLEASE TAKE A LEAD from our friends in the UK…..let’s open a dialogue on trying to stop diagnosing T1D by being diagnosed in DKA.  This is one wound we can, and should, take everything in our power to prevent before the knife cuts the flesh.

Please pass this along to anyone you know in these organizations……..a dialogue can surely continue what has started in ten different states already.

What will it take?  PLEASE let’s open a dialogue.  It’s getting so tiring.  Why MUST it always happen again, and again, and again.  Take action—-ask the organizers of these conferences to hold a discussion……a simple discussion on this topic.  We cannot begin if we do not talk about it……..I assure you it will not go away!!!!!…….and in the meantime it will cost more people their very lives……..needlessly.

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

http://www.mirror.co.uk/news/uk-news/seriously-ill-teen-diabetes-died-7556080

I’m always touched by the strength of families who do so much to make “Hope” a reality.  The biggest hope I will always have is for a cure for this disease.  I know, I know, I KNOW so many say that they are tired of hearing about a cure.  It has been promised so long.  The doctor said way back when it will be in just a few years.  I heard all of that also…..I also do not have an ostrich complex with my head in the sand.  I know the time upon the clock.

And still……..

The DRI had their walk last weekend at Marlins Stadium.   Thousands upon thousands were in attendance.  And wherever and whoever you support, you attend these grass-root-type-events also.  The next time you are at one, do what I do.  I look around at all the families that have been diagnosed more recently than in our household.  I look at the little faces who want a cure……….need a cure.  That hope NEEDS to stay alive UNTIL we get there NO MATTER how long it takes.

The fire in me will never die until we reach that goal we sought from the beginning, a cure.  Management devices are great, and ever-changing, but my goal has never changed since I stood by Kaitlyn’s bedside and promised her that we would get there.  Where is that promise in the world today?  Will we, collectively, be happy with just better management tools?  I welcome these management tools.  I do.

I have seen some of the most incredible advances in this area.  We were there before pumps were in everyday use; we were there when CGM were merely three letters of the alphabet;  glucometers took 90 seconds to give a reading; there was no computer chip on a test strip; insulin was made of pork……and much, much more,  We welcomed all of these wonderful advances.

And yet, and still, with all I have seen in my life,  I take each breath searching for the one and only thing that will make me sleep peacefully at night.  I think we need to get back to what every parents REALLY wants.  I think we need to end this thinking that something which can be grasped is so unreachable.  I think we need to stop listening to voices that  say, “Well sure the cure is important but we need to give all of our focus to a better device”.

Yes, we do need to give focus to better devices………but an equal and even thrust MUST ALSO BE GIVEN to VOICES pushing for a biological cure, where ever you believe that to be.   We walked on the moon…..the vision was given, work was thrust toward that end, and it happened.  Impossible just means I’m-Possible to make a difference.

Does a cure for our children deserve any less?  Do our children deserve any less?

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

The call comes in.
Another child is diagnosed with type one diabetes.
Another family is impacted and changed forever.
The call comes in.

I’m surely not an island when it comes to this type thing, many take the call when it  happens.  We have been there.  We become the ‘one’ people call for whatever the reason; for however the reason.  People hear of someone being diagnosed and they say, “….you need to call my friend, they are very involved……and they can help you.
The call comes in.

I hate those calls.  I certainly don’t mind helping in any way I can but I also am well aware……well aware too much what is about to happen in a household I do not know. I have been there……twice……I wish I never became aware.

One would almost think it gets easier.  It doesn’t.  All of the memories come rushing back to ‘that’ September 26th, or ‘that’ March 20th when my kids were diagnosed.  I now know what I know because going through it educated me like nothing else I could ever learn.  Nothing else compares.

That’s said, there were others helping us also in 1992.  Barbara, Faye, Karen, Marie, Jon, Charlie, Joe, Rhoda, Jane, and many others.  You see this is what we do, we are parents.  Someone was there for us and we are there for others……..it’s the Circle of Life. It’s the Blue Circle of Life in our diabetes world, something we would never see in the Lion King, but it’s there none-the-less.  You have helped someone else because someone helped you.

Read these words from the song, carefully:
It’s the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The (Blue) Circle of Life  

These words are us.  Share how your circle came about and how you continued it.
Today I say thank you to everyone out there who took the time to be part of this Diabetes Blue Circle of Life……and I thank those who were part of ours, so long ago but still remembered, when we needed it most.

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.