Three Years Out……and that Little Heart is STILL MAKING BIG THINGS Happen.

ReeganI know that last Tuesday, September 20th, came and went like any other Tuesday…..the sun rose, the sun set.  It was Tuesday.  Uneventful. Unremarkable.  Just Tuesday. Right?

Not Exactly.

Because three years ago an event occurred that would change the world for so good for so many, but not for the ones who lived it.  Out of their heart-ache, their pain, their suffering…..this world would change.  No one knew back then what would happen.  No one would have guessed it.  Many who have gone  through it have just battled to get their lives back.  Just battled to go on living.  One family, God spoke to, and they listened.

Three years ago, last Tuesday Little Reegan passed.  September 20th, 2013…..and only born in May 2012…..that should break your heart, it certainly breaks mine.  The so many things she should and would have done that will never happen.  Yet out of this broken world, Little Reegan’s mommy received a message.  Now you don’t have to believe this, and that is surely your right.  But the message came from God, she believes that and if you have seen what I have seen thus far, you would believe it too.

During the services that celebrated this way too short life three years ago, Little Reegan’s Mommy was hugged by someone who whispered in her ear, Reegan’s Rule will become law and change the world.

Now it was a battle.  The battle should have been lost many times.  Just the fact that a Democratic Representative introduced it to a Republican House, Senate, and expected it to be signed into law by a Republican Governor would almost seem impossible……right?  But what man finds impossible God makes possible.  And Little Reegan’s family are not weak in spirit or drive.  Neither was Representative Graham who believed in this law, and wrote this law.  How could they continue another day in this battle is completely beyond my comprehension.  But they did…..and they still do.

Reegan’s Rule is now a law.  LAW.  Let that sit in for a while and THAT law is what everyone points to in their efforts today.

>The NASN (The National Association of School Nurses) pointed to that law when they supplied School Nurses around the country the tools to let parents know that they need to keep an eye on their children’s stomach-Flu like symptoms.
>A mom from Texas pointed to that law when she utilized her ad agency to create posters that people could download and hang all over their community.
>Movements began in so many different states to get involved made possible by parents who just believed that diabetes would not do and led the way trailblazing what might work, what could work, and what will work.
>Organizations representing Family Physicians, Pediatricians, Nurses, School Nurse and Diabetes Educators pointed to the law and heard the message and are now implementing programs to get the word out.
>Organizations like DPAC pointed to that law stating they can help by making it easy for everyone to easily contact their legislative representative to hear how serious this missed-diagnosis is all about……and then did it.
>MyGlu and T1DExchange pointed to that law when they began their efforts to capture REAL scientific data on the topic of Missed Diagnosed Diabetes, that data of almost 3000 participants is currently being evaluated and a release of teh findings will be coming in short order.
>Beyond Type 1, a small organization with a reach far beyond anyone’s dream, pointed to the law as it implements awareness programs working with volunteers in so many states so the diagnosis is never missed.
>Companies such as Insulet pointed to the law as they bought people together in a ‘think tank’ to come up with real action to make a difference…..and tehy are working on doing more.
>Companies such as Context Media pointed to the law and stated, why not utilize our resources of 27,000 video units in Medical Professionals across the country to get the word out…..and tehy are doing it, as we speak.
…….and that is merely some of what has happened. SOME TRULY GREAT PEOPLE and fabulous Organizations, Companies making a difference.  There is more.  If you’re not involved as you want to be, just ask.  There is a plan now and that plan needs people, committed people to getting the word out.  Just ask, you’ll be put to work.

That law, which changed many times to get it to the point where it would not be killed in the process survived to its present state.  It needs more pull,  It needs more teeth.  It needs to be built upon. All involved know that and knew that for day one.  But make NO MISTAKE about it—-it is THAT law, and the efforts by THAT family that has caused every other ripple in this lake of tears we are trying to change.

….and still, Little Reegan’s Mommy and Daddy cry themselves to sleep sometimes and her family still wonders……..why?  Why this would happen?  But they have come to know that the world is changing because of their beloved Little Reegan. Three years out, this movement has only just begun.  Do you care enough to help make the change?…..don’t just do nothing.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

2016 Lisa Awards, A Family, Elected Officials, an Organization, and a D-Mom Blogger. YAY!

Lisa and MarkSo hard to believe another year has gone by.  Each year around June (her birthday), in honor of my friend Lisa Carlinsky, I bestow my Lisa Awards — kudos to people who understand the power of one person. To people who, in their own way, changing the world just like Lisa did.

My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards.

She was diagnosed with cancer.  Lisa and Mark (her husband, who is as close to me as any brother) shared their writings of her journey with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad.   Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions.  So many others facing trials hit them ‘head on’, inspired by this young couple.

Eventually what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do.  Her spirit, though, was never defeated.  The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever it is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

So my 2016 Lisa Awards go to:

reegan sun glasses  The Family of Little Reegan.  As I thought about this, and after meeting their family; each and every one of them played a role in making sure Reegan’s Rule became law in North Carolina; the first of its kind.  Much has been written and many others became involved.  But when there was no one around, when there was no one fighting the battle, when there was no one to help…..there was the Family of Little Reagan.  They received a promise that their little girl would change the world.  With the  movement to stop missing the diagnosis of diabetes picking up steam, that promise will be fulfilled.  This one little girl, the power of one, in her short lifetime may very well impact the welfare of kids around the world more than those who have many more years to achieve it.

Representative Graham Senator Smith  Representative Charles Graham and Senator Jane Smith of North Carolina.  These two people could not be more different from their personalities to their political affiliations…..and yet….they reached across the aisle and worked tirelessly in the efforts to make Reegan’s Rule the law of the land.  One has no idea just how hard it is go through the entire process in making an idea become law.  The bipartisanship and the wisdom of these two elected officials are something the rest of the country should stand up and take notice.  Each a power of one in their own right, came together to accomplish the impossible; on October 20th, 2015, Reegan’s Rule was signed into law by the Governor of North Carolina.  Bravo to all who made a difference.

glu GLU/T1DExcgange is my third Lisa Award Recipient.  This organization is presently undergoing an incredible outreach to capture the data that could help present a roadmap of change in the years to come on the missed diagnosis of T1D.  Anna Floreen, Dr. Henry Anhalt and Executive Director Dana Ball (and Co-founder of T1DExchange) are the ones in the forefront but here has been so much work done from people we will never know to make their newest survey regarding missed diagnosis a reality, that truly the fair thing to do is pay tribute to the entire organization.  Many components making up the power of one to change the world we live in, GLU/T1SExchange embodies Lisa spirit as few others ever could.  This data will indeed change the world.

dmom My fourth Lisa Award winner is D-Mom Blogger, author and super advocate, Leighann Calentine.  Her Kids First, Diabetes Second has always been and continues to be a must read and her blog should be visited as often as possible.  Her wit, style, and direct-from-the-hip delivery will enlighten you, inspire you, challenge you, and let you on a little secret—-parents can really have a life outside this diabetes journey.  She is as humorous as she is poignant.  When reading anything she writes, one always feels like a really good friend has sat down next to you in the biggest easy chair to talk with you.  And like a true friend, she does not always tell you what you want to hear; she tells you what is real.  Her long list of awards and accolades are only surpassed by her huge heart to make a difference in our world.  She is a powerhouse, and all done as Leighann would do it…..with integrity and honesty.

So these are the Lisa Award winners this year.  And as always when I write this annul column, it brings me back to a woman who I cherished.  He son is growing-up to be a fine young man and in a wonderful way. Mark (my adopted brother), her husband, has found love again; as Lisa would want it.  And life is moving on.  But Lisa will always and in all ways be present.  And in as much as I love doing this article every year, I still miss our friend, Lisa.  She was some power-of-one.

Congratulations to this year’s recipients.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

So Many Have Asked about Missed T1D Dx Legislation…..A Suggested “Here’s How To……”

two kidsAfter Pennsylvania became the second state in the Union yesterday to have some sort of Legislation or Resolution passed regarding education of DKA and  the missed diagnosis of T1D, many people wanted to know “How do I do this in my State?”

There is no ‘one way’ but I put together a little bit on what we have learned thus far.
Consider this an “A” how-to article; certainly not “THE” how-to article to get you started.  The reading below is long but it’s a map that can be used to get you started.

You have decided that the rules in your state need to be changed regarding ‘missed diagnosed’ T1 diabetes.  You want to change the paradigm of children entering diabetes ketoacidosis (DKA) and you want your state legislator to be involved.  Great.

Now what?

The only way ANYONE became GOOD AT THIS is by doing it……know that as you start.  Do not be afraid to make errors.  Relax.  You know this disease, you live with it every day.  Below are JUST SOME IDEAS.  Add, remove, use what helps and don’t use anything with which you are uncomfortable.

Keep the message straightforward and stay on message/point: Too many kids are being diagnosed in this country with T1 diabetes by going into DKA because flu/virus symptoms are masking the onset of T1 Diabetes DKA. It results in hardship, hospital stays, and even death. A few steps could help prevent it from EVER happening. Stats are not even kept on this phenomena, but we surely know it exists.

The next thing to do is be prepared.  Assume that your representative knows nothing.  Do your homework and see if you can find some statistics from your state about diabetes.  If not, there are plenty of sites that can supply information for you locally, nationally, and globally. Some links:
https://www.cdc.gov/diabetes/basics/quick-facts.html– National
http://apps.who.int/iris/bitstream/handle/10665/204871/9789241565257_eng.pdf;jsessionid=3FF45324056745D94FC9B19DA4009C36?sequence=1 – Global

You will try to arrange a meeting with your representative; when s/he is in the local office is best.  If they cannot meet personally with you, but one of their representatives will; take that meeting.  Get to know SOMEONE in that office. Arrange a sit-down; and discuss YOUR story.

Even if you have not experienced DKA at diagnosis but you have a loved one with T1D; that’s fine.  You are speaking of the rise in T1 in this country and why we need to do something about it. After your story, discuss facts about diabetes–share information. From Medicine.net type 1 diabetes: An autoimmune disease that occurs when T cells attack and destroy most of the beta cells in the pancreas that are needed to produce insulin, so that the pancreas makes too little insulin (or no insulin). Without the capacity to make adequate amounts of insulin, the body is not able to metabolize blood glucose (sugar), to use it efficiently for energy, and toxic acids (called ketoacidosis) build up in the body. There is a genetic predisposition to type 1 diabetes.

The disease tends to occur in childhood, adolescence or early adulthood (before age 30) but it may have its clinical onset at any age. The symptoms and signs of type 1 diabetes characteristically appear abruptly, although the damage to the beta cells may begin much earlier and progress slowly and silently.

The symptoms and signs include a great thirst, hunger, a need to urinate often, and loss of weight. Among the risks of the disease are serious complications, among them blindness, kidney failure, extensive nerve damage, and accelerated atherosclerosis. The long-term aim with treatment is to avoid these complications or, at the least, to slow their progression. There is no known cure.

From Mayoclinic.org Diabetic ketoacidosis is a serious complication of diabetes that occurs when your body produces high levels of blood acids called ketones. Diabetic ketoacidosis develops when your body is unable to produce enough insulin. Insulin normally plays a key role in helping sugar (glucose) — a major source of energy for your muscles and other tissues — enter your cells. Without enough insulin, your body begins to break down fat as an alternate fuel. This process produces a buildup of toxic acids in the bloodstream called ketones, eventually leading to diabetic ketoacidosis if untreated.

Explain the difference between T1 and T2. Share other pertinent facts/information. Now ask how s/he may help:
Here is just a partial menu to consider, go over it with your Representative: 1) Parental Education – Physicians provide this education to parents since parents are the “first responders.” Example: Proposed NC Bill that encourages parent education during well-child visits at specific intervals regarding Type 1 Diabetes.

2) Require physicians to give either a finger prick blood test or a urine test to every/any child who enters the office showing flu/virus like symptoms. This would allow the doctor to know if the child has an elevated glucose level.  Although it cannot be a diagnostic tool for T1D, it will surely show that more testing is needed.

3) Educating school children about Type 1 Diabetes at the elementary, middle school, and high school levels. Should this be part of the core curriculum? This may already be in our curriculum. However, to what extent is this covered in school? In what grades is this taught?

4)  Require Physicians to learn about Type 1 Diabetes (and Diabetic Ketoacidosis) as part of their initial and continuing professional education utilizing it for education credits awarded as is required.

5)  Screen populations for children who may go on to develop Type 1 Diabetes by testing for the auto-antibodies of T1D.

6) Seek laws already in existence where new laws may be ‘piggy-backed’.

Ask your legislature what they think could/might/will work? Enter the dialogue and leave with, “What happens next and when should I check back with you?”

You are on your way.

This is the wording that passed the house in NC; it stands ready to be presented to the NC Senate. A BILL TO BE ENTITLED REEGAN’s RULE AN ACT ENCOURAGING PARENT EDUCATION DURING WELL-CHILD VISITS AT SPECIFIC AGE INTERVALS REGARDING TYPE 1 DIABETES The General Assembly of North Carolina enacts: SECTION 1. Chapter 130A of the General Statutes is amended by adding a new section to read: 130A-221.5. Diabetes education as part of well-child care. Each physician, physician’s assistant, or certified nurse practitioner who provides well-child care is encouraged to educate and discuss the warning signs of Type 1 diabetes and symptoms are with each parent for each child under the care of physicians, physician’s assistant, or certified nurse practitioner at least once at the following age intervals: 1. Birth 2. Twelve months of age 3. Twenty-four months of age 4. Thirty-six months 5. Forty-eight months 6. Sixty months.  Section 2. This act becomes effective October 1, 2015 – See more at: http://diabetesdad.org/#sthash.GCSHKyh8.dpuf (We are well aware that his is a very ‘soft law’ but it is a start.  When this bill passes, we can encourage the State’s Health Commissioner to follow-up with educational material to the medical professionals in the State of North Carolina.  Hopefully son we can say, one down and forty-nine to go. Pediatrics; The Official Journal of the American Academy of Pediatrics wrote in the conclusion of their study on the subject matter of DKA in Youth upon Dx:

CONCLUSION: The frequency of DKA in youth with type 1 diabetes, although stable, remains high, indicating a persistent need for increased awareness of signs and symptoms of diabetes and better access to health care……… Cite:  1.   Published online March 31, 2014 Pediatrics Vol. 133 No. 4 April 1, 2014 pp. e938 -e945 (doi: 10.1542/peds.2013-2795)

A recent study to explore the pathway to diagnosis of type 1 diabetes (T1D) in children from the perspective of the child, family, and general practitioner (GP) concluded in their study, “… that the difficulties for parents and GPs in recognizing the early symptoms of T1D suggests that future interventions should be targeted at parents in the appraisal interval and include the importance of timely presentation to a healthcare professional and the differences between type1 and 2 diabetes.
PRIMARY CARE PHYSICIANS SHOULD ALSO TAKE PARENTAL CONCERNS SERIOUSLY AND DO URINE DIPSTICK TESTS DURING THE CONSULTATION FOR CHILDREN WITH SYMPTOMS OF T1D.”   Cite: (Full study can be found: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3855567/pdf/bmjopen-2013-004068.pdf ) SCIENCE DAILY: (in context) Type 1 diabetes….is estimated to affect around half a million children worldwide, increasing in incidence by an estimated 3% every year. Cite: Society of Endocrinology, Science Daily March 19, 2013 40,000 people are diagnosed each year in the United States Cite: CDC National Statistic Report, 2014

5 Million people in the United States are expected to have T1 Diabetes by 2015, including nearly 600,000 youth.
Cite: JAMA –2014–311: p. 1778-1786

Between 2001-2009 there was a 21% increase in the prevalence of T1 diabetes in people under the age of 20
Cite: JAMA –2014–311: p. 1778-1786

3 million Americans have T1 Diabetes Cite: JDRF.org

Okay: You do not want to go the legislation route, that’s fine.  How about letter writing campaigns to the hierarchy at these organizations painting the picture that something needs to be done.   And enlisting their help to make a difference. The American Association of Family Physicians: http://www.aafp.org/home.html
The American Academy of Pediatrics: www.aap.org
The Society of Pediatric Nurses: www.pedsnurses.org

All of these organizations have state level ‘chapters’ as well.

Do not be afraid to ask the major diabetes organizations that have advocacy departments to help.

Start a campaign today.

I hope this gives you a start.  I surely do not know all the answers and feel free to go in a completely different direction if you wish but ask yourself constantly: Will this accomplish something tangible.  Follow your heart. Follow your brain.

Saving one person is monumental.  My goal and thought process when I started was; “if we can just see one person’s flu/virus-like symptoms and intervene and see if it is T1–and it is—–I would deem the entire effort worth it.  Just a year into it we know of six children.   That does no help to little Reegan or Kycie; who lost their battle—-but in their names (and others) we can change this and we will change this because we choose to just ‘Not do Nothing.”

God bless you on this journey.  And thanks for caring.

I am a diabetes dad.

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

 

NEWSBREAK: PA House Passes Resolution Regarding Better Education For Missed T1D Diagnosis

Debbie Healy When Debbie Healy’s son had a blood sugar of 1400 and his diagnosis of T1D was missed, she realized later on in life just how lucky her family was.  She also grew to know others who were not so lucky.

Not taking ‘no’ for an answer she led the way for PA House Resolution 569 to pass today in the State Capitol in a whopping 196 Yay and O Nay vote encouraging better education of diabetes in the State of Pennsylvania so a diagnosis of T1D is not missed or mistaken because of flu-virus like symptoms.

Based on a similar process where a law was passed in North Carolina, Debbie felt the presence of little Reegan and her family today as she heard the vote; “I just kept thinking of Reegan and how her mother wanted something good to come out of something so senseless.  How we both wanted to do something to make sure it did not happen again.”

Indeed!!!!

Pennsylvania State Representative Ryan MacKenzie not only sponsored the bill, but gave Debbie 15 minutes on his TV station to spread diabetes awareness (see picture above).  “He is such a genuine, caring person; he was with us EVERY step of the way”, Debbie says of her new-found colleague in this crucial battle.  “He was brilliant.”

The passed resolution makes Pennsylvania the second state undertaking such action and other states are in line as well.  Debbie was quick to add, “I am very happy that this resolution passed, but there is still work to be done…..my eyes are on the PA State Senate next.”  You go, girl!!!!!

Hopefully it’s only a matter of time that this leaves being left to individuals and gets tackled by more powerful diabetes advocacy organizations seeing the need—-feel free to drop them a line with a copy of this story and ask them, ‘When are we getting involved organizationally?  When are we going to do this for the Kycies and the Reegans of this world.  How many more must die?” Ask them (and I mean it) and let me know what they say.

Pennsylvania learned today, as they did in North Carolina, Mama Bears set their minds on something, it will surely come to be.  Congratulations Debbie Healy and everyone else who helped this become a vote today, Resolution 569; passing 196 to 0.
The Resolution:
PA Res 569 pg 1
PA Res 569 pg 2

I am a diabetes dad.

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

 

NEWSBREAK: Rep. Graham Presents Copy of New Law to Little Reegan’s Family.

Reegans Rule Law,  Representative Charles Graham visits with Little Reegan’s Family and presents them with a copy of the law that very well may change the face of the missed diagnosis of diabetes in this country.  It was signed into law on October 20th by the Governor of North Carolina.

In that binder is a copy of the law that underwent many changes to become law.  There is a movement in many states based on the premise that better education of the onset of T1D and that kids need to be checked before DKA takes over.  To accomplish the first step is always the hardest…….it is now; complete.

Virus-like symptoms do not mask the onset of diabetes, they should be treated AS POSSIBLE SYMPTOMS and treated accordingly.  I have come to love and fully respect the work of these people……thank you for changing our world.

If you played a role in this initiative in any shape or form, or are continuing those efforts in any way; take a bow—–you are a hero as well.

I am a diabetes dad.

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

 

A Letter of Thanks from Little Reegan’s Mommy!

reegan sun glassesBefore there was a “Reegan’s Rule”, there was a family.  A family, who had all of the dreams any family does.  They are a family of faith.  They are a family of love.  I have never been through anything like what they have been through, and am not sure how I would handle such a tragedy.  I am not so sure I would be as full of love as they are, and have been, through everything they have been through.

In the time that I have worked with Reegan’s mom, the discussion started out as her needing help, it surely ended up differently; for Reegan’s Family helped us.  They taught us.  They taught us that grace by no means reflects weakness. They taught us that faith in what you believe is so much more powerful than defeat.  They taught us that pain can be used to drive an initiative as much as, or even more so, than knowledge.  They taught us that the word ‘no’ is not an option.  They chose to ‘not do nothing’.

Reegan’s mommy sent me the following which I humbly share with you.  I’m not sure if she visits the websites where this will be posted so please, and I hope you do, let them know your feelings by replying on this site so they can be sure to read all of your feelings in one location.  Here is the letter, to the diabetes community, from Little Reegan’s Mommy.

He Kept His Promise
Now that Reegan’s Rule has passed we have had a chance to think back over the past two years and are humbled at what God has done. Reegan was the joy of our family. Anywhere she went she lit up the room. You just couldn’t help but smile when she smiled. We prayed and fasted for two years and God sent her. Our family was complete. Before she became noticeably sick, she was playing around the house opening and closing doors. One of the doors on a cabinet closed on her finger leaving a bruise.

A couple of weeks later is when we had to take her to the hospital.

She was flown to Chapel Hill and we found out her sugar was over 1200. She aspirated that night and was placed on Life Support.

We cried out to God, please Lord we need to know you are in this situation. Send us a sign that you’re in the midst and that’s when we noticed it. The bruise she received earlier which was under her fingernail had turned into a winky-face.


At the time we accepted it as God saying; “I’m here and I am in control.”   Little did we know that this winky -face would be a symbol of things to come. Reegan fought through over 20 procedures for 6 weeks when God decided to call her to Heaven.

At Reegan’s fair-well, a dear friend of mine whispered in my ear, “We will start Reegan’s Rule to make sure this doesn’t happen again.”

In my brokenness I heard what she said and those words started haunting me about 6 months later. All I could think to myself was, “God, if this has happened to us, it has had to have happened to someone else.”  We did not want anyone else to ‘walk through this”, so we started Reegan’s Rule Petition on Change.org and her page on Facebook.

We were amazed at all of the contacts from parents that had diabetic children that had the same story as us or very similar to it. God gave us that wink and it was a semi colon; which means something comes after this. This is not the end! And two years and 9 days after the day she passed. Her law was passed. Who but God?

As her parents, and family we want to say Thank you. Thank you to every parent who is fighting against diabetes. Thank you to each child who’s bravery continues as you fight. Thank you to those who are fighting for a law like Reegan’s Rule in your state. Thank you to every person who has signed her petition. Thank you to everyone who has prayed for us and given encouraging words. Without God and you we couldn’t have done it. We love each of you and pray blessings over you.
-Reegan’s Family

I am a diabetes dad.Please visit my Diabetes Dad FB Page and hit ‘like’.