Until There Is a Cure

"It's time to move beyond a mere offer of hope, it is now about delivering on a promise!"   -Ed Damiano, PhD, Associate Professor of Biomedical Engineering at Boston University

At the Children With Diabetes Focus on Technology conference this past weekend, I had the opportunity to listen to Ed Damiano give an update on his research into building the Bionic Pancreas.  Along with his team at Boston University and Masachusetts General Hospital, Ed has developed a closed-loop bionic pancreas that uses continuous glucose monitoring along with a pump that will deliver both insulin (to lower the blood glucose) and glucagon (to raise blood glucose).  His goal is to have this bionic pancreas ready to go in just 44 months!  Just in time for his son to go off to college :)

Could this truly be a reality?

After we left the conference, my mind was spinning thinking about this bionic pancreas.  I was going over every word that I had heard over and over again.  But I had to get through the rest of the day.  Pack up our friends Wendy & Jason who came in for the conference, deliver them to the airport, switch into mommy gear and off to the basketball game with my peewee cheerleaders.  All the while, it never left my mind.  I had to work really hard to keep my emotions in check while I did my mommy duties.  Monday morning, all three kids were delivered to school and then I let my brain go there again.  I was home, alone, catching up on laundry...and bawling at the possibilities that lie ahead for my daughter.

It's through Children With Diabetes that I realize I'm not alone.  That we are not the only ones tormented with the burden that diabetes places on our child.  It was this CWD conference that restored my HOPE!  Ed Damiano is just like Keith and I.  (Ok, well HE is brilliant!, but I digress...)  What I mean is that he knows the same burden.  The burden that diabetes places upon his son...this is what motivates him.

I believe in him.

I got goosebumps when Ed began to speak at the closing keynote.  The first slide of his presentation said "Making Diabetes Management Disappear..."

He continued to explain how the bionic pancreas will work.  This technology does not require the person with diabetes to even know what their blood sugar is.  No counting carbs.  No adjusting basal rates.  The system makes decisions about how much insulin or glucagon should be given without the user's input.  It is completely autonomous.

Ed talked about the clinical trials.  Watch this amazing video about one of his out-patient trials.

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He talked about results of these trials.  Amazing results!  In a 5 day experiment in adults with type 1 diabetes - walking around Boston not thinking about diabetes, they were able to achieve an average blood sugar of 131.  What was just as amazing to me was the fact that, in all 20 subjects, they experienced blood sugars below 60 less than 2% of the time.  BGs below 120 - 60% of the time.  And BGs below 180 close to 90% of the time.  This was only a five day period, but the predicted A1C for these folks would be 7.1%.  And remember, this was the bionic pancreas working autonomously.  They didn't have to think about diabetes at all!

I was already cheering him on at this point.  But, it was when he spoke about the emotional aspect of this technology, this is when the uncontrollable tears flowed for myself and Wendy (and many others as I looked around the room).  He said,

"It will be a whole different world for people who have been living with diabetes.  They will not take this for granted."

I encourage you to click these links and learn about the bionic pancreas.  I encourage you to follow the clinical trials and ask questions.  Years ago when I heard "artificial pancreas" talk, I blew it off.  It sounded like another empty promise of a cure.  I have now done a 180 in my thinking.  THIS is it!  This is a game changer for people living with diabetes.  It is NOT a cure.  But I believe until there is a cure, THIS will be the BEST option for my daughter.  It will "unburden" her life.  No, diabetes won't go away for her.  No, the need to be cautious won't go away.  No, the need to wear a pesky medical device to keep her alive won't be gone either.  But the day to day burden of managing diabetes will be taken off of her shoulders.  This "unburdening" is what makes me cry.

I want this for Ally.  I want her to experience this "unburdening of D."  

I believe in Ed Damiano!  I have hope in this research!

Listed below are a few links to resources about the bionic pancreas.

Resources:
http://www.bu.edu/bostonia/summer13/damiano/
http://www.artificialpancreas.org/
http://boston.cbslocal.com/2013/09/04/diabetic-children-test-bionic-pancreas-at-mass-camp/
http://www.youtube.com/watch?v=06rpdVs0okE&feature=share


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

In Loving Memory of Shamae and Her Crazy, Happy Life!

This is an impossible post for me to write.  It feels impossible because I feel like I'm writing something that just can't be real.

Shamae passed away in her sleep.  I read those words on Sunday and have been trying to come to terms with it since.

Shamae and I first met online in early 2010 through a group of Dmoms.  It had been just over a year since Ally's diagnosis with Type 1 Diabetes.  I had spent the first year after diagnosis just getting by.  Shamae reached out to me.  She encouraged me to start a blog of my own.  She gave me courage and hope...in 2010 and ever since!

We continued to get to know each other through reading each other's blogs, written mostly about our families living with diabetes.  We connected because our daughters with type 1 diabetes were the same age.  Syd and Ally became pen pals and it changed the way that Ally looked at diabetes.  She felt less alone.  Funny, because that's exactly what my friendship with Shamae did for me.  I felt less alone.

 My very first blog post Celebrate You, was dedicated to Shamae.  She played a major role in moving me from the overwhelmingness of that first year to learning to live again, just in a different way.

I am inserting an excerpt from that first blog post because I was speaking specifically about Shamae.

 I want to celebrate that so many of you have reached out to me, welcoming me into this group of people who understand what our life is like. I want to celebrate that some of you forced me, ok...encouraged me to write this blog. I think it will help.

In fact, it already has. You see, I was only introduced to you and your blogs a couple of weeks ago. Once I started, I couldn't stop reading them. As I read some of them, I felt like you were writing the thoughts right out of my head. Others were compelling, some were shocking! I have smiled, laughed and cried at your blogs.

Ally noticed that I couldn't pry myself away from the computer and she asked me what I was reading. I explained that I was reading about other families who have children with Type 1 Diabetes. She was interested. "Mommy, can I read it too?" So I let her write a note to a couple of girls her age. She received a note back from both of them and is ecstatic! (Thank you ladies!) She wants to know all about them. She made me print their notes and she ran to find an old binder that she could keep them in. They were so special to her that she would not let me punch holes in them, so we had to find page protectors! She is scheduled to be Star of the Week in her 1st grade class in a week or so. She has been waiting for her turn for a long time and has about 20 "special" things that she wants to take in to share. This afternoon she told me that her MOST special thing is now her binder with her "new friends" in it and she can't wait to take it in to share with her class. :)

So, again, let me CELEBRATE you! Connecting with others who understand is already making a difference for me...and even better, for Ally!!

Shamae, thank you for sharing your life with us.  You were an inspiration in many ways.  I admire the way you lived your crazy, happy life.  I admire your passion for being a mother and a wife.  I remember that you once wrote "Being a mom is so fulfilling."  I admire your dedication to educating others about Type 1 Diabetes...your dedication to finding a cure...your dedication to making a better outcome for Syd and all those with Type 1 D.  I will always cherish the "Why We Do It" video that you made because I know how much love you put into making that.  (Video has a permanent home on the bottom of my blog!)  Thank you for being supportive to me and lifting me up when I needed it most.  You will always have a special place in my heart.      

A friend of mine saw my post on facebook and said, "You know I can't help but believe that God has a bigger plan for Shamae.  What if she can do more on the other side?"  I believe that Shamae has earned her right to fly among the angels...because to me she was an angel on earth.  I bet she even asked to have a blue circle on her angel wings :)

Shamae made an impact on so many lives.  I believe she will continue to do that.  I miss her presence here on earth already, but I will never forget her!

Join me today in once again, Celebrating Shamae and her Crazy, Happy Life!

A 10 year old's review of Superstar Dreams

As you probably know, Lilly Diabetes and Disney partnered to create a series of books about kids living with diabetes.  In case you have not seen this series, or if you'd like to see the newest books added to this collection, visit Lilly and Disney's Type 1 Diabetes Book Shelf page.

While at the Children With Diabetes, Friends For Life conference in July, we were lucky enough to receive a couple of the new books in the series.  Ally very quickly read Superstar Dreams and wanted to share her review with you.

Superstar Dreams

           Summary

This was a GREAT book. It was about a girl named Morgan who was newly diagnosed with type 1 diabetes and had trouble making friends at her new school.

 When she finally met Lizzy and those 2 became very good friends, Lizzy’s BFF, Naomi, suddenly didn’t like her because she thought that she was trying to steal her friend away from her.

Her new friend has a sleepover birthday and she can’t decide whether to go or not because she isn’t sure she feels comfortable going because of her diabetes.

  Eventually everything worked out and Lizzy, Morgan, and Naomi all became VERY, VERY, VERY, good friends.

 

            How I can relate to that

 She doesn’t check her sugar at night but her lows are a lot worse than mine and she feels them when she is asleep.  In the book it says that Morgan feels light-headed and it feels so bad. I check my blood sugar at night no matter what.

I would love to go to a sleepover but my Mom would be the one who wouldn’t feel comfortable. I’d feel comfortable because I know how to manage my diabetes well and I have lots of good friends comfortable with it who would help me with my lows.

Love to tell you more but don’t want to spill the beans. :)  If you want to know more, then you may like to read the book yourself. ;D

I was going to add my two cents here, but I think I will save it for a post of my own!  I will translate one line, for the record!  "I check my blood sugar at night no matter what."  Actually means, "Mom or Dad check my blood sugar every night!  :)



(To read Lilly & Disney's summary of this book, click HERE.)


We are grateful to Lilly Diabetes and Disney for giving us our very own copies of a couple of these books.  If you have not been able to get your hands on any of these books, check out T1EverydayMagic.com where they will soon be adding digital versions of some of these titles.

You may also like to visit www.spoonful.com/type1 for tips on family life with type 1 diabetes.