Watch out Washington…here she comes!

More than two years ago, our lives changed forever when Isabella was diagnosed with type 1 diabetes just weeks shy of her second birthday. We were literally crushed with the weight of her diagnosis. We sat in that hospital room, just as far too many before us have, with tears in our eyes, sadness in our hearts, confusion and worry in our minds…and then something amazing happened.

We wiped away our tears and started thinking about how to turn this terrible, life-changing disease and experience into something positive. We decided right then and there, while sitting on that uncomfortable couch in that hospital room, that we would fight for Isabella and many others by raising awareness and raising money to support research towards a cure.

Our hope is that by sharing Isabella’s story we can inspire others and ultimately help change the world! We are proud of what we have accomplished over the past two years, but we still have a lot of work to do…

That’s why we are so excited to announce that Isabella was selected to be a Delegate for JDRF 2015 Children’s Congress! She was one of about 150 delegates selected out of more than 1,500 applicants! Isabella can’t wait to share her story in Washington!

Our little girl is just getting started on her path to change the world!

-Greg

Childrens Congress

A Glimpse Into the Future of T1D

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Isabella and her “I Heart Guts” Pancreas Pillow

On Tuesday, Kristina and I had the opportunity to attend a JDRF research update featuring Tom Brobson, National Director of Research Investment Opportunities. We were excited to hear about the research going on at JDRF and, selfishly, what it means for our daughter now and in the future.

On the way to the event, Kristina mentioned that while she was changing Isabella’s insulin pod in the morning before school, Isabella looked at her and said, “Mommy, I don’t want to wear a pod anymore.”

My heart literally sunk and I felt tears welling up in my eyes. Isabella has never said that. She’s been on her pump for about 8 months or so and for the most part, she understands why she wears it and understands that she doesn’t really have a choice. But, she doesn’t fully understand that it will never be a choice…she may eventually choose a different pump, or may even choose to go back to injections…but the harsh reality is that she literally needs her insulin pump to survive every day of her life. That is, until a cure, or at least something that “feels” like a cure, is found. I began thinking, hoping and praying that we would hear promising news from Tom Brobson at the event.

Tom started his talk by saying, “I don’t have any extra letters after my name like PhD or MD…but I do have T1D.” Tom was diagnosed with type one diabetes about 10 years ago, at the age of 44. He joined JDRF about a year later, hoping to do his part to find a cure for himself and many others. As he spoke passionately about several key research initiatives, it became very clear that Tom was not only passionate about JDRF and the great work the organization is doing, but he was also passionate about making the lives of those living with type one better, including his own, on the path to a cure. He became somewhat emotional a couple of times as he spoke; this isn’t just his job, but his life!

Tom spoke about three main research initiatives, Smart Insulin, the Artificial Pancreas project and Encapsulation. Each of these initiatives have gone through various stages, navigating through the lengthy and quite costly FDA approval process. I expected to hear about how these three initiatives were showing very promising results in mice, cats or better yet, monkeys. The great news is that all three of these programs are currently in the human trials stage or entering human trials soon!  This means that we are that much closer to a dramatic change in Isabella’s life!

Smart Insulin has been in the news recently as Merck, one of the world’s largest pharmaceutical companies, announced earlier this week their plans to begin clinical trials. Smart Insulin, which was originally backed and supported by JDRF, is a form of insulin that is injected perhaps once daily and essentially turns “on” and “off” according to glucose levels. No more glucose checking. No more carb counting. No more dangerous lows. Isabella’s body could get the insulin that her pancreas can’t produce, without any additional effort or monitoring. This would be huge! As Tom put it, this could be “a game changer.” Not only for those living with type one, but also for those living with type 2 who aren’t often prescribed insulin. That’s all great news!…but unfortunately, Smart Insulin is still many years from becoming a reality.

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Tom Brobson, JDRF National Director of Research Opportunities, showing us the artificial pancreas technology.

Tom also spoke at length about the Artificial Pancreas project. The Artificial Pancreas is not what it may sound like (no, it’s not a lab-produced pancreas that’s implanted into your body to replace the “bad part”). It’s essentially a computer program that can run on a smartphone…and essentially functions as a pancreas to ensure insulin is adjusted up or down when needed.

Tom has personally participated in several trials. He talked about one trial in which he was hooked up to the system and then was told to go eat a Five Guys burger and fries, which he gladly did, although he was quite skeptical at the time that the system would actually be able to keep his glucose under control (certainly not as good as he could on his own!). To his surprise, after eating a giant burger and fries, the system was able to keep his blood sugar under 200 and then bring him back within his normal range in a relatively short amount of time. There’s a word to describe this: amazing!

The system has performed extremely well in clinical trials. Tom mentioned that he is generally very tightly controlled and tends to be “out of range” only 4-5 hours per day. When he was on the system, his “out of range” time dropped to about 40 minutes per day. A new trial is starting soon and people will basically be handed an iPhone with the system and told to go live their lives for 6 months. After the trial, the hope is that the data and results will be sufficient to obtain FDA approval for the Artificial Pancreas. This could be 2-3 years out…while not a “cure,” it would certainly change Isabella’s life and enable her, and us, to live our days and nights without constantly thinking about her type one diabetes.

I asked Tom what he felt was the most exciting and most promising initiative underway at JDRF, fully expecting him to say the Artificial Pancreas. But, instead he talked about “Encapsulation.” To describe it, used the analogy of a shark cage. If you want to observe sharks, you could get into a cage where you would be fully protected and unharmed from sharks that want to eat you. The concept behind encapsulation is very similar…JDRF is working with partners to be able to insert beta cells into a small medical device that would be implanted into the body and protect the cells from other dangerous cells that want to destroy them. The beta cells would produce all the insulin you would need for up to 24 months. This also wouldn’t be a cure…but two years without worrying about diabetes is pretty damn close! This is still a long way off before it could be used as a treatment, but very exciting nonetheless.

So, the bottom line is that we heard a lot of very exciting stuff that inspires us and gives us hope! In speaking about his view of a cure, Tom said, “someday someone will write a book about the cure for type one diabetes and I wish I knew what chapter we were on now.” Don’t we all.

I had an additional opportunity to meet with Tom again Wednesday morning in a smaller group session at our Northeast Ohio JDRF Chapter Board meeting. He talked about the research initiatives and the fact that they are getting closer and closer to reality, which also means they become much more expensive. In talking about JDRF’s efforts to date and current efforts to push into the future, he said, “we’re the type that will take this on and change the world…but we need your help.”

Please help and join us on our journey to a cure for type one diabetes. Together, we can change the world!

-Greg

 

Captured by Kelly Photography – Mini Sessions to Benefit JDRF!

Very excited to announce that the super-talented Captured by Kelly Photography will be hosting special mini sessions for TWO days, April 5th & 6th, and donating a portion of each session to JDRF in Isabella’s name! We have had Kelly take our family photos multiple times and they are always amazing.

If you are in NE Ohio & would like pics for Easter, or just new family photos, this is a wonderful opportunity AND you’ll be supporting a great cause. Please see the flyer below for more info about how to schedule your time slot. Thank you for supporting our journey to a cure for type 1 diabetes!Captured by Kelly

Silver Linings…

Betsy 2013 1509Just over a year ago Greg and I sat in our kitchen in Mexico City, laptop perched on the kitchen counter, deciding what we should set as our fundraising goal for our Team Inspired by Isabella’s first JDRF Walk to Cure Diabetes.  We had just returned home from the hospital after Isabella’s diagnosis and were ready to hit the ground running with doing something, anything, to help our daughter and raise awareness and funds for a cure.

Greg began completing our team registration and set our goal at $1,500.  I cringed and told him I thought maybe $1,000 or even $800 was a more realistic target.  We were, after all, just 3 weeks out from the walk date and we couldn’t expect people to just donate to a cause about which they knew nothing.

But I was wrong.

In just three weeks we raised nearly $6,500.

Sitting at our kitchen table this spring deja vu set in as I once again second-guessed what we had decided we would set as our fundraising goal for this year: $7,000.  We had time on our side this year and worked hard to share Isabella’s story with everyone we knew.  Our move back to the U.S. also afforded us the opportunity to reach out to our Ohio friends to organize a large team of walkers.

Three weeks ago we had raised just 53% of our fundraising goal and our hope of having walkers en masse looked bleak.  We had heard from others who had been doing these walks for many years say that “every team runs its course”.  We half-wondered if this had already happened to ours…Isabella’s diagnosis was no longer fresh in people’s minds and the novelty of supporting our cause had probably worn off.

But we were wrong.

Fast forward to today at 9am as we began our 2nd Walk to Cure Diabetes:

  • We didn’t raise $7,000…we raised nearly $9,000.
  • Of the 376 registered teams we were the 12th HIGHEST fundraiser.
  • We didn’t have a large team of walkers…we had the 3rd LARGEST team at the walk.  Fifty-five AWESOME people, to be exact.
  • We didn’t receive donations from some of the same people as last year…we received donations from nearly ALL of them and many others.  In fact, a total of 97 donations were received to support our team.
  • We entered the inaugural JDRF Walk to Cure Diabetes #iwalkfor video contest…and we won!  Anyone attending the Cleveland CAVS game December 7th will get to see our video played on the Jumbotron AND see our family center-court during the game!  (Click here to check out our winning video!)

So, if anyone asks us if the novelty of our cause has worn off, our answer would be this: type 1 diabetes is the definition of novel and no two days, let alone two hours, are the same.  So no, the novelty of our cause has not worn off and won’t until a cure is found. And as for our team “running its course”…not even close.

Cheers to Changing the World~
Kristina

“But I’m not sick.”

Extraordinary DestinyThis evening while we were putting her to bed, Isabella asked why we were going running with her Aunt Shelly tomorrow morning. We told her that we were running a 5K in the Susan G. Komen Race for the Cure to support her grandmother who has been battling breast cancer for the past 9 months. We told her in simple, but clear and direct, terms that grandma had breast cancer and had been sick, but is much better now. We then said that we were going to do a walk for her next weekend. Isabella was listening very closely…then seemed a bit concerned and said matter-of-factly, “Mommy, but I’m not sick.”

While Isabella does not look sick and certainly doesn’t act sick most days…she is literally fighting for her life, every minute of every day. While she looks and acts like a perfectly healthy three year old little girl, the reality is that Isabella needs precise amounts of insulin to survive since her body does not produce any of its own. If she eats too many carbs or doesn’t get enough insulin she could go into a coma. If she doesn’t eat enough carbs or has too much insulin her blood sugar could drop to life-threatening levels. Every day is a constant battle for her life.

At her age, Isabella doesn’t fully understand the severity of her type 1 diabetes and for now the responsibility of managing her disease falls fully on us. We often go to bed wondering if tonight is the night that we will find her unconscious and have to quickly inject her with life-saving medicine and then rush her to the ER (fortunately, we have not experienced this yet…but it is far too common for parents of small children with T1D). We check her blood most nights at 3AM (one of ~10 finger pricks each day) to ensure her glucose hasn’t plummeted or skyrocketed to dangerous levels. We can’t remember the last conversation that we had between us in which we did not talk about glucose levels, carb counts, or insulin bolus amounts.

We are in awe of how Isabella handles everything. In the past 12 months she has gone through more than any child her age should have to experience. Her strength amazes us. Isabella truly inspires us each and every day. And it pains us to think that our little girl will have to live with this disease for the rest of her life. This is why we do what we can do to raise awareness and raise funds towards research and ultimately a cure for type 1 diabetes. But we can’t do it alone….we need your help!

Thank you SO much to those of you who have already donated to support team Inspired by Isabella in the upcoming JDRF Northeast Ohio Walk to Cure Diabetes! With your help, we have raised nearly $5,500 for this year’s walk (bringing our total fundraising since Isabella’s diagnosis to over $15,000!)! BUT…we are still short of our $7,000 fundraising goal for this year!

If you have not yet made a donation, please help us achieve our goal by making a donation of any amount using the link below.  With your support, we can change the world!

http://www2.jdrf.org/site/TR?team_id=83886&fr_id=2368&pg=team

Sometimes, you just need a good cry…

lemonsIt was bound to happen…it just took a year.  Greg and I finally coordinated our emotional roller coasters to have ourselves a good’ ole cry tonight.  Now, it wasn’t waterworks, by any means.  It was more of a collision of emotions occurring whilst sitting down to dinner after a long weekend.  Either way, we needed it.

I’ve said many times before that  few tears have been shed since Isabella’s diagnosis. I would say that I had expected today to be filled with anxiety and apprehension…today was Pump Day, after all.  We knew Isabella would be a rockstar when it came to the actual pump hook up…and we were right.  No tears. No screams.  Just a simple “Where’s my cookie?” (Yes, I bribed her to sit still for the pump insertion.  Don’t judge me.)

However, 8 hours later we sat at our kitchen table, kids miraculously asleep, tears welling up in our eyes…in silence.  We were coming to the end of a day that felt much like a chart of Isabella’s blood sugar: a mix of high and lows.

My excitement about Pump Day quickly faded this morning as we listened intently to the trainer explain features of the device.

“You should keep the sound turned ‘On’ for now so you’ll hear if there is an error in the pump or a reminder…but when she’s a teenager she’ll probably want it set to ‘vibrate’.”

A teenager?  She’s not even 3!  This simple sentence painted a very real picture for us: Isabella will almost certainly STILL be managing her T1D in 10 years when she becomes a teenager.  For those of you reading this who haven’t been personally affected by this disease, let me share with you the thing we ALL hear shortly after diagnosis: “A CURE will most likely be found within the next 10 years.”  Sound familiar to anyone out there in T1D land? I am positive that I echoed this very phrase to multiple family members and friends just one year ago.  As much as I would love to believe this, my gut tells me we still have quite a bit of progress to make.

Greg and I also spent some time tonight talking about people’s reaction to seeing Isabella’s OmniPod pump. I wish every one of you could have seen her excitement when we arrived home and she jumped out of the car and ran over to Max to say “Look at my pump.  My insulin is in there…and it’s mine, not yours.” It also took all of 5 seconds for her to adorn the pod with Disney stickers featuring Jasmine and Ariel:)

We really hope that people ask, in curious and non-judgmental ways, what this thing is that is attached to her teeny arm.  We want her to wear it with pride and never be embarrassed by it.  I truly hope she always wants to bling it out and play “Pimp My Pump” forever (curse you, Xzibit, and your flashy grills), and that she has the power to take someone’s lack of knowledge about type 1 diabetes and turn it into a teachable moment (my college professors are beaming right now).

In the meantime, we’ll continue our work towards a cure.  After all, we still have 9 years to go 🙂

Cheers to Changing the World,
Kristina

PS-Thank you to all who have contributed to our JDRF Walk to Cure Diabetes Team this year!  We have met 66% of our goal and would love to have support from many others.  If you’d like to donate to our team, please click here.

And Just Like That, Year Two Begins…

Not Cool Pancreas

She loved the t-shirt we made for her: Not Cool, Pancreas…Not Cool. 🙂

A year ago today we sat in Isabella’s room at the Hospital ABC in Mexico City on DAY 2 of her life with T1D.  Today we began YEAR 2.

Yesterday was amazing…Isabella’s journey was celebrated not only here in Ohio, but also in Texas and Florida. Though we have so much to be thankful for, I have to admit I am looking forward to the day we can celebrate a cure for this disease.

Over the past 24 hours we’ve received some very generous donations from friends, family, and strangers to support our team in the upcoming JDRF Northeast Ohio Walk to Cure Diabetes.  Words can’t begin to express our gratitude to everyone who has joined us on our journey to a cure for type 1 diabetes…we are truly blessed.  A year ago we would never have imagined all that we would experience and accomplish since Isabella’s diagnosis:

-We’ve met some amazing people who also have T1D in their lives;

-Become deeply involved with JDRF (including Greg’s board appointment to the Northeast Ohio chapter);

-Visited the DRI (Diabetes Research Institute) where we met with diabetes researchers;

-Reached nearly 600 Facebook followers and the same number of Twitter followers;

-Led teams participating in JDRF walks in Ohio and the FIND walk in Mexico City;

-Attended the JDRF Hope Gala in Miami;

-Created partnerships to raise funds (including jewelry, t-shirts, hair bows, and ornaments);

-Partnered with amazing businesses to host successful fundraising events;

-Won 2nd prize in a diabetes awareness photo contest sponsored by the JDCA;

-Attended a Children with Diabetes Conference at Disney;

-Been profiled in various online and print publications;

-Launched this website (yay!);

-Raised nearly $14,000 and counting towards diabetes research…

And we’re not done yet 🙂

As promised, here are some photos commemorating Isabella’s 1-Year Diaversary yesterday!

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Waiting to greet her party guests!

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Family and Friends Celebrating Isabella’s Diaversary in Ohio

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Blue (sugar-free!) cupcakes!

 

 

 

 

 

 

 

 

 

 

 

 

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Isabella’s aunt and cousins organized a balloon launch in Florida to celebrate with us!

Oma Opa Blue Day

Isabella’s Oma, Opa, and cousin supporting her Diaversary in blue all the way from Texas!

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