On Saturday, May 5, our family will be walking in our 6th Juvenile Diabetes Research Foundation (JDRF) One Walk in Moline. There is a lot of legwork leading up to the walk, including fundraising, and often we are asked, “why do you do it?”
Where our story started:
In August 2011, our then 7 year old had a summer of strange symptoms – among them were fatigue, weight loss, insatiable thirst, frequent trips to the bathroom and weird vision complaints. We were just coming off a hot July trip to Disney, where I could tell you the location of each and every drink stand and bathroom. We were repeatedly told by our doctors’ office that was normal for July, until we finally realized it was anything but normal. I trusted my mom gut, and our Grace was finally diagnosed with Type 1 Diabetes. We spent almost a week in the PICU at Iowa City on my birthday and what should have been her first day of 2nd grade. Due to the multiple missed symptoms, she had a life threatening condition called DKA, where her body had gone too long without insulin and was beginning to shut down. Some kids don’t recover from DKA. Grace was lucky, and we started our new life with Type 1. Even in the hospital, JDRF volunteers brought gifts and hope, and helped us see that we could do this.
Living with Type 1:
Type 1 diabetes (very different from type 2) is an autoimmune disease striking children and adults, in which one’s immune system attacks the pancreas and it no longer secretes insulin. Without insulin (prior to 1920), everyone died. So, we inject synthetic insulin, with every meal, every snack, and throughout the day, and night (for 7 years my husband and I have taken turns getting up every 3 hours to check her blood sugar trying to prevent dangerous highs and lows in the night). Synthetic insulin is not ideal, but it’s our only choice right now, and it keeps those with Type 1 alive. Synthetic insulin does not adapt like a working pancreas – so with any change to routine, food, exercise or weather, a Type 1 diabetic can end up having too much insulin in their body, or not enough, causing highs and lows. It is a challenging, relentless, dangerous, and invisible disease. And there is not a cure. Not yet. There is hope though.
The impact of fundraising:
JDRF raises money to fund research for a cure and for improved technology. When Grace was first diagnosed she had to check her blood sugar 10-15 times a day to be safe (that’s a lot of finger pokes for a kid). Because of the nature of artificial insulin, her blood sugar can rise and fall quickly, within a few minutes time. A 7-year old doesn’t always take time to let us know or even feel that this is happening. Just 7 years later, thanks to research funding from and advocacy by JDRF, Grace wears a continuous glucose monitor (CGM). This technology alarms when her blood sugar is too low or high, and allows her to cut back on the finger poking to about 4-6x/day. A new, more advanced CGM just was approved by the FDA, and will soon be integrated into an insulin pump, ideally helping diabetics level out their blood sugar even further. There are also some very smart scientists working on cell encapsulation and regeneration, vaccines, and a number of different avenues for a potential cure or longer term solution. None of this would be possible without JDRF. This is one reason we walk, and why we raise money.
The real reason we walk:
The best part about the walk is the community support we feel. Type 1 is a lonely disease for a kid. Like Grace, many type 1 children are the only ones in their school with diabetes. They sometimes feel alone, frustrated and different. When we attend the walk every year, Grace feels at home, and she feels supported. She talks about the walk all year, and is excited to design her annual shirt and get her team together. There are hundreds of children and adults there with diabetes, who speak her language. Our team of friends from volleyball, church, and school who donate, buy shirts, and walk with us mean the world to her, and to us. Her junior high even donated funds from a school dance. That kind of support speaks volumes to a teen who sometimes feels isolated and different with a relentless battle in front of her every day. The walk helps her see what a warrior she truly is, and it is a big reason that Grace has the positive attitude she does in living with this disease. It is a sight to behold to see over 100 teams in matching shirts, all supporting their loved ones with Type 1. What an amazing thing support is. Grace always tells me that when a cure is found, she hopes we will still have walks to celebrate. What a party that would be!
If you are struggling with anything, I hope you can reach out and find the support you need with an in person group, or online. If you’ve been hesitant to join a group or a walk, do it! It can be life changing. We have been so fortunate that JDRF has been there for us, and we welcome the walk as an opportunity to support their mission, which supports our Grace and so many kids and adults living with Type 1.
If you know anyone with Type 1, or just want to learn more and support some amazing kids with an amazing cause, join us May 5 at the JDRF One Walk at Black Hawk College to help advance a cure for type 1 diabetes! There are free healthy snacks (thanks Hy Vee!) and bouncy houses, so bring the kids!