Death from Diabetes……A Small Glimmering Light has Arrived

By far, this is the hardest thing that I have been involved both in and with; on our diabetes journey and within our diabetes community.  It is hard.  It is sad.  It is reality.  And quite truthfully it just sucks.

The number one thing that occurs when someone dies in our diabetes community, is the loss of what to do when it happens.  What can we do to help?, is asked over and over again.  What to do, what is right, how to help.  Now there is something with true substance that we can all do when someone passes away.  And unfortunately, it will happen again.  My picture today is the blue candle, but I have added a glimmering light, small as it is, because it is a light that many families will need at their most difficult time, that may now be there to help.  Somewhere to turn when so all alone.

Today is National Bereavement Day and Beyond Type 1 has ONCE AGAIN stepped up, to help our community. I believe that Beyond Type 1 (BT1) is truly one of the most remarkable organizations in existence.  What no one touches…..they hit head on.  Listening to Sarah Lucas, Thom Scher, and/or anyone at BT1 when they discuss diabetes topics, you feel their passion–it becomes tangible; their actions are a force, their actions are quick, their actions have substance.

Today, this wonderful organization has partnered with one of the people I respect most in this battle, Michelle Page Alswager.  Michelle lost her precious Jesse at age 13.  Others may just give in and give up, and truthfully, no one in the world would ever blame them.  Michelle has taken her grief and reached out to help as only someone who has experienced this pain can…….she has made it a rallying cry to help others.  She has been an advocate for years to those who lost someone and, as is their custom (missed diagnosis, Tu Diabetes etc), Beyond Type 1 has stepped in to fill a void, and if you know BT1, you also know they do nothing halfway…….this is no exception.

Jesse Was Here
From their new website page:
Launching August 30, 2018, Jesse Was Here was inspired by Michelle Page-Alswager’s experience after the sudden death of her 13-year-old son, Jesse, from Type 1 diabetes. Grieving the loss of her child, and the potential loss of the diabetes community, she created an online community to support parents who had also lost their children to Type 1 diabetes. By connecting with others who shared her experience, she realized many of those seeking support and opportunities to honor their loved ones, also struggle with unexpected funeral expenses, ongoing medical bills and sometimes even the funds for a headstone. Through her efforts, she discovered many others — not just parents of young children — were looking for peer support, practical information, coping tools and financial assistance. Working together, Michelle and the team at Beyond Type 1 are creating a very special program to serve this unique and deserving community.

Keep this as a resource because, the painful reality, it will be needed.  While you’re at it, give a few bucks to them as well because in reality, they can only help with what they have.  If you have ever asked, How can I help that family?—-now is your chance.

Truthfully, I hated writing this article today because it just reminded me of just so much pain I have seen others go through over the years.  But it is comforting to know that people like Michelle are not afraid to walk-the-walk, and organizations like
Beyond Type 1 are not afraid to listen, and step up.

It is what makes being part of the club none of us wanted to join; a little more bearable.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Seriously???? Another Couple Charged in a Diabetes Death for Religious Reasons……But this Time I wanted to Know More.

Another couple chargedLast Thursday,  a couple was arrested in Oregon and charged with first and second degree manslaughter in the death of their daughter who died in February.   It appears to be that their daughter died from untreated T1 diabetes.

This has happened before and I am sure it will happen again. 

In as much as we tend to immediately become angry, it is important to note that this is not a cut and dry established precedent in criminal law.  When it comes to religion, faith, and the healing and medical process, the two do not always mix, and more than that they are not easy to examine separately.   Here is a copy of the story but my article today is to go further than just share the story.

The child died in February, they were arrested last week.  For months to pass without an arrest is a clear sign that this is not a slam dunk case.  This got me to thinking.

I remember when I had written about another case like this a few months ago. I found it interesting at both the outrage and also the compassion felt towards the parents’ who some believe were not fully understanding; for whatever reason they didn’t.

Today, my goal is to not only just inform you of this story, but to also inform you that I went a bit further.  I had questions as to how this could even happen and I wanted to know more than ‘just the story’.  I figured you would want to know more also.

There was a study done on 172 children.  In the study there was evidence that parents withheld medical care because of reliance on religious rituals and document sufficient to determine the cause of death between the years of 1975 through 1995.  The study was done by an MD, Dr. Seth Asser; and a PhD, Dr. Rita Swan.

The study revealed that 12 of the children who died during this time frame, due to withholding medical treatment, were children with T1 Diabetes; the largest among all specific disease states with the exception of pneumonia in varying degrees (cancer was broken down into various forms of specific cancer).
The entire study can be read here. 

I tracked down and spoke to Dr. Swan who told me that she has ‘been at this’ for over 30 years.  She shared a horrific story of one of the T1 deaths that I will not share (it was truly disturbing) but will tell you that Dr. Swan stated the death, and what happened during the trial, was ‘disgusting’. She created a website called CHILD, Inc which is an acronym for Children’s Healthcare Is a Legal Duty.

She has been an advocate since she herself was part of this practice and she reveals her story on her website (you can scroll on the picture over the home page, when you see Matthew Swan, you can read their entire story).  In part she writes: 
After nearly two weeks of serious illness, a practitioner said Matthew might have a broken bone and that Christian Scientists are allowed to go to doctors for setting of broken bones. The Swans took Matthew to a hospital, where the disease was diagnosed as Hemophilus influenza meningitis. He lived for a week in intensive care. The Christian Science practitioners would not pray for him while he had medical care.

My conversation with Dr. Swan was extremely enlightening.  To speak to a mom that had been caught up in turning their backs on conventional medicine due to a faith-based means of strictly healing by prayer; then realizing that may not have been the correct choice; and then to try to achieve goals to help children who seem to have no choice in the matter whatsoever; just left me breathless.

I asked Dr. Swan why it would take so long from the time the child died to the time officials brought charges against the parents; and she stated that in this recent case in Oregon, “It was actually pretty quickly”.  There are many reports from the medical examiner’s office that must be evaluated to know the specific cause fo death and whether or not it could have been prevented.  Everything must be weighed to determine that there are charges strong enough to be bought forward.  Remember; the parents did nothing wrong and must be proven otherwise; not the other way around.

She stated also that it is a difficult situation because in many cases specific churches will state that they actually did not tell the parents they should not get medical attention but she knows first hand that they will say that ‘God will heal (their child)’ and  ‘God doesn’t like for them to do that.” (seek medical attention).  That can weigh heavily on an individual active in a church believing in this approach.

She informed me that in the thirty years she has been fighting, changes have been made.  Religious exemptions have been repealed in many states when it comes to withholding medical care but the sound in her voice makes me think it is a lonely fight.  A long fight.

I could not find much more than what I found in Dr. Swan’s site and other stories where this unfortunate turn of events occurs.

The legal system is surely in place for a reason but I kept coming back to the same thought; how my heart breaks for the child who could have been saved.  Seems senseless to me.  Just all so senseless.

I am a diabetes dad.

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

When it Happens…..Is There Anyone Who Can Help?

blue candleCould anyone imagine a loss so huge?  I cannot.  Being part of this community we see it too often, don’t we?

Even once, is too much.

Is it happening more often or is it the fact that we are electronically connected that we find out about it……..sometimes instantaneously it seems?

One of the most incredible women I know is Michelle Page Alswager.  I have discussed her heroic action many times.  The loss of her beloved son has made her an expert in a category that no one should ever be asked to particpate…….ever. 

Being Michelle, she has incredibly reached out to those who have been in this horrific tragedy because she knows.   She knows all too well.  And yet, selflessly, she reaches out.

As we move forward I want you to know that should you hear that someone is in need, there is a group that can help (if any help would do).  There is a group of parents who have all had this most incredibly painful sacrifice who support others as only they can understand.

Should you hear of anyone in the process of dealing with this tragedy, please reach out to me and I will do all I can to connect them with Michelle or someone from this group.  I will not contact them myself.  And if any others who read this post want to volunteer to be contacted directly, they will let us know but I did not want to volunteer them.

I’m always amazed how connected this diabetes community is worldwide and how people take their experiences to help others…… matter the personal cost.

This was not an easy column to write; but I KNOW this most incredible, select group of people; who have made themselves available for the worst possible moment in time.  Being part of this community, you should know also.

May no one ever have to reach out to them; but they are there.  They absolutely never wanted to be there either; and God Bless each and every one of them for opening up to their experiences and opening up their hearts as the rest of us never could. 

Any words I could say to this group would only sound like rhetoric, but thank you for being there for those who only you can understand; you all humble us to our knees.

I am a diabetes dad.

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

NBC News Star Stuns a Room about the Death of a Colleague.

He was introduced.  He is mega star in NY News.  How fortunate that he would lend his good name and time to such a worthy cause. He calls them the way he sees them.  He created his “The Debrief” as a vehicle to help accomplish telling the stories needing to be told.  He is direct.  He is bold.  He doesn’t like ties, or one would think such a thing because ‘on air’ he usually goes without.

Last night he wore a tie. In front of me, last night, he is the Special Guest Emcee for the Empire Ball in New York.   A thousand people in attendance, over a million dollars raised. 
And as he starts his opening remarks he shocks the room into complete silence.

“You know this is a disease (diabetes) not to be taken lightly at all.  A cure is needed”.   He continues to tell the heart-wrenching story of a colleague;  “Not a colleague I know, but a colleague in the NBC Family.  My NBC Family”

I mean, literally a pin could be heard should it have been dropped.

He relays the heartbreaking story of Joel Connable, an Emmy Award winning newsman from NBC 6 in Miami who was transferred to his new job at KOMO-TV in Seattle.  He married his long time girlfriend and two weeks later he died from a  seizure on November 6th; the exact cause is still unknown if it was an insulin pump malfunction or not, but the exact cause is still being investigated.  The result is the same.  Joel is gone.

The Diabetes Research Institute certainly knew Joel’s work and he had done stories/interviews regarding the incredible work being done.  He had interviewed our scientists at the DRI.

Mr. Ushery probably did not know that the very event he was at last night to support the DRI was the same DRI in Miami that knew his colleague.  He continued on what a tragic loss this was to the NBC Family.  Young, energetic, and in the prime of his career.  It’s a story too many of us know; so many know more about than I.

It was a tragic loss to all that knew him……..isn’t that always the case?

David Ushery is correct, a cure is needed.  

I am a diabetesdad.