Tuesday, September 9, 2014

Donate to find a cure for Juvenile Diabetes

Please donate today to Ava's JDRF Walk to Cure Diabetes team, Ava's Brave Bots! Her goal is to raise $1500.00. Your support will help fund life-changing research and create a world without type 1 diabetes (T1D).  
  
Roughly 30,000 people are diagnosed with T1D each year in the United States. 

Our beautiful niece Ava needs your donation! We need to find a cure for her. We need to wrap our arms around her and her beautiful family who have accepted and championed her diagnosis! We love you, Ava.  

JDRF is the one organization with the plan, influence, and ability to not just deliver hope, but a series of life-changing therapies that will make the burden of T1D less and less. Until it no longer exists.

Click HERE to donate to Ava's Brave Bots team!

Here is the story of Ava's diagnosis. 

By Leif Bruce

We will turn Type One into Type None


Of all the landmarks that have charted our lives, nothing has been as dramatic as the event that unfolded on the morning of Sunday, June 10th.  Ava was nearing the end of 2nd grade and her sister, Lola, was finishing up Pre-K.  We were all excited about the upcoming summer and the vacations we had planned. I had just started a new job that had taken me away for a few weeks and on Saturday I was preparing to leave again.  In the days that unfolded before I left, Sierra and I were discussing something that had been troubling us both.  Ava, our 8 year old daughter, had been suffering from insomnia and more recently began using the bathroom constantly; it seemed like every 15 minutes she was flushing the toilet and then drinking another glass of water. 

As diligent parents of our generation, we consulted the expert that we had always turned to with our problems…Google.  The answer, well there seemed to be some problem with the solution Mr. Google was providing us.  It turned out that a crowd sourcing answer to a medical mystery was a foolhardy approach; people only posted the worst case scenario anyway?!  

So we elected to turn to the “5 Minute Diagnosis” manual I had acquired from a previous employer.  Of course, we started with the desired diagnosis and tried to link her symptoms to a bladder infection.

Much like forcing puzzle pieces that don’t fit together, the bladder infection diagnosis didn’t make sense.  So, we opted for the “Nuclear Option” and brought a urine sample to the doctor for testing and I hopped on a plane for Princeton, New Jersey.  After touching down I caught a cab headed north from the Philadelphia airport and answered a call from my wife, Sierra.  She sounded scared and matter-of-fact, if that’s possible, and I can only vaguely recall the conversation we had as the blood left my head and I tried to choke back my tears.  The only words I heard and needed to hear for that matter, were, “I’m on my way to the emergency room; she has diabetes.”  It was at this moment we posted another landmark in our lives and our journey as a family with diabetes began.

For me, the trip home was clumsy, long and full of movie worthy missed connections.  For Sierra, Lola and Ava the first night alone with the disease unfolded differently.  Lola was left at home with her aunt and felt alone without either of her parents.  Sierra was feeling vulnerable and alone as a parent; for the first time not knowing how to care for her child and without me by her side for support.  Ava lay exhausted by a day, a life turned upside down by one word, diabetes.  It was Sunday night and we all cried, alone.

We discovered a lot about ourselves that day.  First, we learned quickly and adapted even faster.  Sierra and Ava left the hospital with the combined knowledge of a Certified Diabetes Educator (CDE) and were skilled at the art of testing blood sugar, counting carbohydrates and delivering the proper insulin dose.  We spent a entire week learning about the carbohydrates in our pantry, marking food containers and making lists of approved snacks. Next, we discovered that although diabetes stinks, we can handle it and it cannot control us; we controlled it.  

Ava, went back to school on Tuesday and explained to her class why she had been out for a day and described, elegantly for a 2nd grader, what diabetes meant to her.  We also chose to tackle all the family vacations we had planned, proving to ourselves that NOTHING gets in the way of a family vacation.  Finally, we realized that through all the tears and angst over the disease and what challenges it might create for each day, we were strongest as a family; together.  The four of us were an unstoppable family unit, capable of tackling diabetes.

Does diabetes still throw us for a loop? Of course. Does the day-in and day-out of the disease take its toll on Ava? I know it does. Has the disease only been a source of sadness? No way!  I have become more passionate about my career and my company; did I mention I work for the company that makes her insulin?  The leader in research funding for diabetes.  

Sierra’s diligence to learn about the disease keeps Ava in the hands of the best caregiver in the world, you guessed it, Dr Mom.  

Lola has learned how to be patient, well some times, but when Ava cries about diabetes Lola cries with her because she is Ava’s biggest fan. 

And of course, Ava has become our hero.  Why?  Well, for some reason diabetes made her realize that anything in life is possible and nothing can get in the way of her dreams.  She starting running long distance on the track team, because what other sport would make a parent of a child with diabetes worry more?  She wanted to be a famous singer, so she starting taking voice lessons and ended up singing the National Anthem in front of 2 statewide track meets.  Finally, of course, she’s our hero because she handles diabetes in style.

So why “Ava’s Brave Bots”?  When Ava was first diagnosed she was afraid of the disease and afraid of the shots and finger pricks.  She was able to find the courage and bravery to conquer this disease from the Brave Bot she was given from the Arts and Crafts Center in the hospital.  The Brave Bot was just a domino that had been painted like a robot and given life by an amazing and compassionate artist named Gary Hirsch.  He creates the Brave Bots to give away at the Randall Children’s Hospital, they are intended to help children that are diagnosed with or dealing with challenging diseases.  For Ava, this simple gift gave her the bravery she needed to take charge of her disease.  So, we are calling our team Ava’s Brave Bots!

If you’ve read this far, here comes the plea.  Please donate to JDRF or come to Oaks Park on September 28 to walk with us.  Simply put, no other organization gives as much (% of dollars raised) to finding a cure and improving the lives of people living with Type 1 diabetes. 

If you want to join our team, Ava’s BraveBots, and walk with us or simply donate in her honor, your money is going to an amazing cause.  Our family thanks you in advance for any support you can lend to this effort.

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