A Rollercoaster Weekend of Emotions

Last week, Children with Diabetes hosted Friends for Life 2015 in Orlando Florida.  This is the most amazing diabetes conference for families on earth.

It is an experience that can evoke a sea of emotions.  Those who get to experience a Friends for Life Conference will feel the love and support immediately.  They watch name tags and put real bodies to Facebook profile pictures and Twitter handles.  They will take part in sessions that allow them to share their feelings, learn new techniques and hear about amazing new developments.

Sarah Loebner summed the conference up perfectly when she sang her song “Do you want to be my FFL?” (Check it out here… https://youtu.be/yh1m997pWhw )

Those of us unable to attend the conference ourselves, enjoyed viewing pictures and reading posts about what was going on in Florida.  You could feel the love spilling over the internet.

On Saturday July 11th, the feelings of happiness were pushed away as a sadness enveloped the diabetes community.  Many people had been following the story of Kycie, a young girl who was misdiagnosed with the flu when in fact she had Type 1 diabetes.  She slipped into a coma and experienced very serious brain damage because of this oversight.  Her story and her progress had been shared by many people in the diabetes online community but on the 11t11738031_10153498655789451_1000286532184841248_nh, her parents posted that she had died in her father’s arms.

The news saddened everyone.  The need for doctors and parents to be aware of the fact that type 1 diabetes can present itself at any age was posted on every other Facebook page.  People were reminded that a small drop of urine can save lives.

As this outpouring of grief and information was filling the internet, a new story was being shared.  A young boy named David was fighting the same battle as little Kycie!! Once again a Type 1 diabetes diagnosis had been missed and a child was fighting for his life.  Tragically, he too would pass away on Sunday July 12.

The grief is tangible.  The pain is real.

Friends for Life shows us how amazing life can be despite a diagnosis of diabetes.  They provide real examples of people who are living life fully for years with Type 1 diabetes.  They showcase the latest in technology and advances.  Despite all of this, if a child or adult is not diagnosed with type 1 diabetes in a timely fashion, the results can be deadly.  This weekend has proven this once again.

My own son was misdiagnosed when he was just 2 years old.  When the proper tests were run, he was given just 24 hours to turn around.  That was 15 years ago.  It terrifies me that with all of the advances we have seen in diabetes technologies that other families are still experiencing the pain that we did…and a lot worse.

RIP David and Kycie. 11750729_10207446600706801_4876256436333725936_n