Playing a Small Role in Extending T1D Awareness

Last fall we were fortunate to have the opportunity to get involved with Riley Children’s Foundation and their fundraising efforts. They invited us to be a part of a video production that was played at their Annual Luncheon, where donors and supporters are invited to hear and see the impact that their generosity has. Each year at this event they highlight a few diseases by interviewing families impacted by it and doctors and researchers treating and studying it. This year, T1D was one of the diseases being emphasized so we were asked to participate. While not the camera loving type, we didn’t hesitate to say yes. We considered this to be a great way to help extend awareness of the disease and how it impacts our families. We also saw this as another opportunity for Emerson to get more comfortable with having the disease and others knowing about it. The more she realizes that she is normal, even though she may have a couple more devices / tools than most kids, the better prepared she will be to deal with kids that try to make her feel less than special as she gets older.

The video was recently made available to us and we have posted it in case anyone is interested in seeing it. At the event we were also happy to see that T1D research was one of the featured articles in their Annual Report, and our story was part of that story. The more eyes focused on this disease the better – both for our kids and those that haven’t yet been diagnosed!

Spreading Awareness – One Friend at a Time

In a prior post we talked about how Emerson took Rufus (the JDRF diabetes bear) to school on a recent day and talked to her friends about diabetes. This was a great opportunity for her but not an entirely new one, as her school friends have been exposed to this disease through her for nearly a year now and have been truly great, with some even participating with her in the JDRF Walk for a Cure last year. Those same opportunities have not always presented themselves in other settings though…but that is beginning to change.

Emerson has been taking gymnastics for a little over a year now. Our house has become her second gym as she makes use of whatever furniture she can to practice what she learns each session. Her hard work has paid off as she has steadily advanced through the different class types and levels, with her most recent move occurring just in the last couple weeks. She is now part of this gym’s pre-team program, which is made up primarily of 5 and 6-year olds (she is not yet 4 ½). Something we noticed immediately is how much more inquisitive this age group of kids is. At the time of Emerson’s first class her pump site was on her bottom. We are “podders” so the pods create a noticeable bulge under her leotard when they are on her back or butt. During the first session she was paired up with another kid and as they were taking turns we saw the girl stop Emerson for a moment, turn her around, pat her butt and begin talking to her. We were not at all surprised to see Emerson respond immediately with a quick response and shrug of the shoulders before continuing on with the activity.

From the first day she was diagnosed we have always made her feel as though she is special and that she has an opportunity to educate others about this disease (not that she always got that but we feel she is beginning to). When we made the Omnipod our lifeline of choice we again made her feel like she had a cool device that other kids would ask her about and that she should be proud of. Every session at gymnastics as she has interacted with different kids we see them inquire about what is under her leotard or armband (we use the Bands 4 Life armbands for extra protection when she wears it on her arm). We watch as she responds quickly and naturally to make them aware of what it is and what it is for without any signs of embarrassment. She is not ashamed at all about her condition or extra “equipment” and just takes it all in stride. We couldn’t be more proud of her and hope that going through these experiences at such a young age will make it easier on her when she gets to the age where kids may try to make her feel different and not so special. Even more we hope that these types of interactions are happening everywhere, so as today’s young T1Ders get to that age, other kids will be fully aware of the disease and realize that it doesn’t make those with the disease any less normal than they are.

Driving Awareness and Helping to Fund a Cure for T1D

In November, we attended the Riley Children’s Hospital Annual Luncheon for a very special reason. It all began a couple months ago when we were contacted by Emerson’s endocrinologist who wanted to know if our family would be willing to participate in a video production that was going to be used in the fundraising efforts of the Riley Children’s Foundation, which provides extensive support and funding to Riley Children’s Hospital. Given the cause we agreed without hesitation – not realizing at the time that we would have to speak on camera! We soon learned that the video was going to be part of the program at the Riley Foundation Annual Luncheon, where donors are invited to listen to stories about different conditions affecting children and to hear directly from Riley patients - all to help the donors realize the impact of their support.


Although we felt very fortunate to have Emerson diagnosed and cared for at Riley – one of the country’s best children’s hospitals – we had not yet become all that familiar with the work and role of the Foundation. This left us not knowing what to expect at the luncheon. Soon after arriving it was clear that any expectation we would have developed would have been far exceeded. Riley hosts the annual luncheon each year to focus on selected diseases / conditions. This year Type 1 diabetes was one of the diseases highlighted, which is why the opportunity was extended to us.


During the portion of the luncheon focusing on Type 1, attendees heard some of Emerson’s diagnosis story as told by us and from her endo who disclosed that Emerson was the sickest diabetic kid she had seen in years. The video presentation also included interviews with diabetes researchers at Riley, who talked about the progress and developments being made towards curing this disease. At Riley they are not satisfied with improving the management of the disease and feel they are at the brink of finding a cure. They indicated that there has been an explosion in Type 1 research over the last ten years, which has translated to exponential growth in their learning about what causes the disease. This is all great news for everyone out there impacted in any way by this condition.


On our way home we began to look through the materials provided to attendees as they left the event. We were completely surprised by the fact that Type 1 diabetes research and care was the topic of a feature article in the Foundation’s annual report, and portions of our story and interview were included in the piece. We were ecstatic to see this as it was another way to further increase awareness of this disease.


However, we also left the luncheon with emotions on a different end of the spectrum. We heard some very touching stories of kids and families being impacted by far worse diseases and saw kids that would certainly give anything to be in Emerson’s shoes. There are days with diabetes that feel like nothing could be worse for your child but this was proof that we are actually very fortunate and that things could certainly be worse. It didn’t take us long to decide that we are going to support the Riley Children’s Foundation as much as possible going forward, along with our continued supporting of JDRF of course. We look forward to attending next year’s luncheon and hope we have future opportunities to help spread the awareness of this disease and to assist with fundraising on this scale.