2019: Why We Walk?

Well my goodness, Trey’s Avengers, have we really been doing this for SEVEN years?   It does not feel like seven years ago that I stood at Kid Med and had a doctor tell me that my sweet 6 year old child had Type 1 Diabetes (a disease I knew nothing about), and that he would have it forever.    Seven years since we rode in that ambulance for our first visit to the PICU.  Seven years since we learned what a pancreas did and how to stick our kid with needles.  Seven years of counting carbs, monitoring his sugar and inserting medical devices.  Seven years of acting as his 24/7 pancreas and keeping him alive. And of course, that makes this our 7th JDRF One Walk!!

Seven years ago they said the cure was right around the corner.  And while we have yet to turn that corner, or even see it in the distant future, we still believe it’s coming.  During that time, we have been fortunate enough to see some very exciting technological advancements.  Trey is still connected to his Dexcom CGM (continuous glucose monitor).  That CGM now also connects to his pump (that administers insulin to him 24/7) and can tell it to stop giving him insulin when his blood sugar is dropping.  This has been amazing.  He experiences so many less life threatening lows and we all get a bit more sleep at night. 

In all things, we try to focus on the positive and not the negative.  So we are not sharing pictures of his struggles.  The night he fell below 40 (around 30 he would start having seizures and around 20 could be fatal) for almost 2 hours.  The morning he woke up throwing up because of an infected infusion set that stopped delivering insulin overnight.  The 150+ times have had to insert an infusion set on his arm, thigh or belly (or the mess of scars they leave behind).  Or the morning he burst into tears in front of his class because the standardized test proctor was unprepared to meet his equipment accommodations (don’t get me started!)   The struggle is still all there.

But there has been so much good.  Trey has had another great year!   His first time at horseback riding camp (“Mom, can we get a horse?”), his first time snowboarding, his first Broadway show and his first kayak trip down over Hollywood (Richmond’s own Class IV rapid).  He just started 8th grade and we are so proud him, how hard he works and how much responsibility he has taken for himself and his T1D!.  He is kind and funny and loves adventure.  And each year, on Walk day he is always so filled with joy and overwhelmed with gratitude that so many of you take the time to support him.  It is truly one of his favorite days of the year!

This year he also did his first clinical trial!!  He is also currently enrolled in the final pediatric artificial pancreas trial for Tandem’s (his pump) new Control IQ Technology at the University of Virginia!  He is one of 150 kids across the country helping with this final stage of this trial before the FDA approves it for pediatric use.   What will it do?  It will help control his blood sugar all the time.  More insulin when he is high and less insulin when he is low.  It should provide him much more freedom and less work to keep his sugars in line.  Freedom?  Well its relative, he will still have two medical devices hooked up to him at all times with two separate infusion sets in, at all times, which we still have to change ever 3-10 days.  The original trial for this technology were JDRF funded and we are excited to be a part of it.  These technologies are not cheap. So we are excited that through JDRF’s Advocacy, more insurance companies are covering it.

While we have seen many advancements in technology, we have also seen our health care system shift and change in ways that have made the burden of caring for Type 1 nearly unbearable for many families.  There is so much discussion now about the cost of insulin.    There is so much misinformation.  This is leading to Type 1 families resorting to insulin rationing, crossing the border to buy insulin and using older, less effective OTC insulin.  This is dangerous and, in some cases, fatal.  It is a tragic moment each time we lose someone in the T1D community simply because the medicine they need to survive has become so unaffordable for many.   It happens more often than most people realize.  Wondering what that looks like?  Our last five vials (with insurance and the manufacturers discount) was $767.71.  That lasts less than two months. And without it, he would die.  We are fortunate that we can afford this, however many cannot. That is why we are thankful that JDRF continues to advocate for Insulin Affordability, helping to make insulin accessible to everyone that needs it. 

The great work JDRF is doing is made possible be money raised at One Walks and by generous donors like all of you. In these seven years, Trey’s Avengers has raised over $74,000.  A number that never ceases to amaze me.  And it is because of all of you!  Each person who has helped along the way – our friends, family, co-workers, neighbors, a handful of complete strangers and a bunch of amazing businesses.  We appreciate every bit of support we have received from you all.    Every penny makes a difference as we seek to improve the lives of our T1D community and seek a cure for this disease.  This year we are once again hoping to continue this journey and raise another $10,000 for JDRF before September 26th.  We appreciate all your gifts, in any amount.  To make your tax-deductible gift to the JDRF, through Trey’s Avengers please visit our JDRF OneWalk page today!

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