Why We Walk: 2020 Update

By anyone’s standard, this has been quite a year. And while the world continues to focus on a pandemic not to be named, life goes on… for all of you, and all of us. We have had to stop doing a lot of things, but Type 1 Diabetes, unfortunately, takes no breaks.

But through it all we have made the best of it and continue to be positively impacted by the effort of the JDRF and all of you. Let’s start with Covid. Having an immune compromised family member has been a complicated thing this year. Are we in more danger? Are we not? I can’t honestly say we know for sure. But what little we do know is that while Diabetes often appears on the list of “comorbities” that puts a person at greater risk, it is also commonly believed that if you maintain a healthy weight and have controlled blood sugar that a T1D should be in no greater danger than any one else of a severe Covid case. Why am I telling you that? Because we are very fortunate to provide Trey with the most up to date technology that does an AMAZING job of regulating his blood sugar. Better blood sugar = safer from Covid. That’s big! And that technology came directly from research funded by the JDRF.

And this year Trey was fortunate enough to be part of the pediatric study for this technology. The Tandem X2 Control IQ was an amazing experience. You can read more about our experience with it here!

Outside the UVA Center for Diabetes Technology, Trey holding his new Tandem X2 Pump with Control IQ.

Having amazing blood sugar control, that is considerably easier to manage has also allowed us to breath a bit easier as Trey persues the things in life that he loves. He loves the water. He loves kayaking and stand up paddlebaording.

This summer, while we did not see any of his friends, he was able to be a Counselor in Training at Passages Adventure Camp. Sending your kids to work all day on the James River, traversing rapids, going on long river trips and being in the sun can be a bit of a leap of faith. To that, each year we add thousands of dollars of medical equipment, an iPhone (neither of which are waterproof), several infusion sets that have to be taped, tacked and wrapped in place and a variety of low-sugar rescue snacks, glucose and rapid acting glucagon. Our goal is to be prepared for anything. We are so thankful for the technology that enables him to live his best adventure.

Side note – that wrap on his arm – that’s to keep the Dexcom attached to him.

We are also thankful this year, that with the help of the JDRF Advocacy program and thousands of supporters who took the time to write our elected officials, here in Virginia, House Bill 66 passed. This bill effectively limits the monthly copay for insulin to $50. This is huge. The current “retail” value of insulin is over $300 per bottle. Trey uses 2-3 PER MONTH.. Even with insurance (because historically, all insurances covered it differently, we have had a 3 month supplies of insulin cost over $1,000). Our family is thankful we have always been able to pay for insulin, but for many in our community rationing insulin has become a life or death situation. These are truly life changing effort on the part of the JDRF.

And if your wondering about Trey, he continues to exist above his Type 1. Last year he saw his first big concert (Twenty One Pilots), he acted in his first play (Annie Jr), he got his first job (Passages) and got into governor school (BRVGS). He “graduated” 8th grade and this fall he started High School with virtual learning. We are so proud of how hard he works and the young man he is becoming.

Our family is so thankful that all of you have chosen to support Trey and his goal of a cure. And in doing so, support the JDRF! Despite advancements in technology, Type 1 is still a horrible disease. And while our family is fortunate to be able to provide the best technology, many families still live with the rigor of multiple daily injections and finger pricks. The technology is amazing, but what we really need is a cure. We are passionate about the JDRF’s purpose and believe in their cause. Because it is our purpose. And we appreciate all of you for you support.

The Great Reveal

Many years ago when our sweet 7 year old chose a team name, we became Trey’s Avengers. Because what seven year old doesn’t love a good superhero! Since then, it feels like we have been them all. We can’t help but feel very thankful that Marvel continues to pop out their movies and add to their universe, so that we can add to ours. Seriously Marvel, thank you!

So here we are in our 7th year and we have had some super fun themes for our team:

  • 2013 – Hulk – Smashing Diabetes (green)
  • 2014 – Captain America – Slashing Diabetes (bright blue)
  • 2015 – Iron Man – Attacking Type 1 Diabetes (maroon)
  • 2016 – Thor – Hammering Type 1 Diabetes (gray)
  • 2017 – Wolverine – Slashing Type 1 Diabetes (dark blue)
  • 2018 – Spiderman – Fight Type 1 Diabetes (red)

Where does that leave us? Ok, lets be honest, we are running low on the good ones. But we still have a few more up our sleeves and this one is pretty fun. So announcing for 2019:

Rocket Racoon – Rocketing to a Cure!

Look at that, even that model looks happy about it! We can’t wait to rock these with Trey on Walk Day. If you are there, come find us – your generosity has already earned us a tent on Donor Row and we are already planning a fun Guardians of the Galaxy themed photo booth.

Thank you for all your support and all you do for Trey’s Avengers and the JDRF. Walk Day is just one month from today – so yes, there is still time! Looking to donate? You can click the DONATE NOW button on the top menu bar and it will take you there!

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!

T1D Decal Fundraiser

Share our mission with the world and help raise money for the JDRF.

This year, Trey’s Avengers is excited to bring back our T1D Awareness Decal fundraiser.

These decals were custom designed for Trey’s Avengers.  They are created three color (red, white and blue) with high quality, outdoor vinyl.    These are vinyl decals, not stickers (the black is not part of the design).  We are so excited to work with vinyl creator Precious Gems, located locally in Chesterfield, VA.

Decals are only $14.  They can be mailed directly to you or picked up at the RVA One Walk.

To order:

  1.  Email:  danielle2721@gmail.com
  2.  Include your name and mailing address.
  3.  Payments can be made through Facebook, Venmo or paypal (danielle2721@gmail.com)

Proceeds benefit the JDRF through Trey’s Avengers.

 

Thank you for your support of Trey’s Avengers and the JDRF.  Together we are creating a world without Type 1!

CURE TYPE 1 Decal C

 

$2,500 raised at Trey’s Avengers 1st Annual Cornhole Tournament

Wow!  What a day we had yesterday!  Our hearts are just over-flowing with gratitude for everyone involved with our first ever Cornhole Tournament!  $2,500 for JDRF! Where do I even start!

We filled THIRTY ONE of our thirty two spots – so close!  And we had a great group of people out.  Tons of spectators and friends!

We appreciate everyone who came out to join us – those who played, everyone who donated or bought raffle tickets, our volunteers, our friends and the fine folks at our sponsor, Hurleys!  The kid’s had a great time in our kid’s are and on stage, calling time, announcing games and pulling raffle tickets!   They were naturals.

One of this tournaments special rules was the ‘Cheats for Charity’ – $3 let a team jump around, steal bags and slap them out of the way all to increase their chances at victory.  We had one team swat a bag into the Bocce court!  Soo much fun to watch and of course, meant lots of extra cash for JDRF!

In the end, after almost 5 hours of play, our champions were crowned, winning a set of custom made cornhole boards.  Second and third place team took home Prize packs donated by Innsbrook merchants.  Congrats gentlemen, you all played hard!

 

Thank you all for your support!

Still interested in donating to Trey’s Avengers and JDRF – hit the DONATE NOW button on the top of this page.

2013 JDRF One Walk – Richmond, VA

What a crazy and unexpected year it’s been and what better way to end it than this Walk.  Almost a year ago, Trey received his original diagnosis of Type 1 – it was a scary and emotional time as we started our journey into the world of Type 1.  A world we will not leave until a cure is found.

When our family decided to join the JDRF Walk for a Cure in July it was mostly a leap of faith.    A “well…. why not” moment.  We didn’t have big plans, we were just going to see what happened.  And well, all of you, our amazing friends and family happened.    We felt love and support from across the country as so many people send kind words and donations to JDRF and so many of our friends joined us on Walk Day.  With your help, Treys Avenger’s raised over $7,200 in our first year!  Thank you!

And let’s just say that Walk day was perfect.  Weather was perfect, walk was beautiful!   And Trey’s Avengers won the tee shirt design contest!!