This is a picture of Julia the day she came home from the hospital after being diagnosed with diabetes. Our awesome neighbors made the welcome home sign which really made Julia feel good. A lot has change in her life since that day. From what she eats and drinks to insulin injections and finger pricks to check her blood sugar. We are hoping to change this. That is what this walk is all about. Changing her life so she doesn’t have to worry about these things.
Help us find a cure for Julia by clicking the link below
Diabetes is a disease that is somewhat misunderstood by most people. They know it has something to do with sugar and insulin but not much beyond that. What most people think of when they hear diabetes is Type 2 diabetes which is the more common form of diabetes in the US. Type 2 can often be treated with diet and pills. Type 1 diabetes, also called juvenile diabetes, is a life long disease where the individual is insulin dependent for the rest of their life. There is no cure and there is nothing you can do to reverse it.
Our daughter was diagnosed with T1D 8 months ago and it has rocked our world. I asked Julia to write about her experience with diabetes and here is what she wrote:
“I found out that I had type 1 diabetes on September 26, 2012. It was a huge shock for my family. A lot of people think that all you have to do to take care of yourself is to just check your blood sugar once in awhile, but it is actually much more than that. Before I eat anything, meals or snacks, I have to check my blood sugar and take an insulin shot. To figure out how much insulin I need I have to add up how many carbs I am eating then divide it by a certain number that my nurse gives me. After that, I check my sugar. If it is over 120 then I need a corrective dose. But if it is below that then I don’t need to do anything. Even though I am different than all of my friends I can still do all of the things that I did before.( except eat pixie sticks!) All of my friends and family are super supportive. My family and I are going to walk for a cure for diabetes. If someone could find a cure it would change my life drastically. If you want to help change my life and other kids then please give to help us find a cure.”
Once she figures out how many units she needs she injects the insulin rotating her injections from her arms, legs, hips, or stomach. This is done at least 5 times a day. Every night at 9:00 Julia also has to inject a long lasting shot of insulin which stays in her system for 24 hours. Caring for diabetes is a lot of work.
Along with the constant monitoring and care required to be a healthy diabetic, there is also the concern of the long term effects diabetes can have on Julia if she has high blood sugars. Diabetes can cause blindness, neuropathy, organ damage and loss of limbs and can even cause her to go into a diabetic coma. Low blood sugars can cause her to become unresponsive, loose her ability to swallow and can cause unconsciousness. As a parent, these are things that cause great concern for us. If a cure could be found for Julia it would radically change her way of life. New research and technology have made dealing with diabetes a little easier and until a cure is found, we can only hope for more improved ways of dealing with this disease.
There is a lot of help offered for type 2 diabetes because it is much more common. This is not the case for type 1. The reason we are participating in this walk for JDRF is because JDRF is the only worldwide organization that provides financing for type 1 diabetes research and advocacy in Washington DC. JDRF has been a tremendous help to us in dealing with diabetes especially with education and support. We are asking everyone we know to help support JDRF. Your support is helping Julia and millions of others who deal with type 1 diabetes every day. Please take a moment to consider what you can do to help. No amount is too small. If you would like to help, you can go to www.walk.jdrf.org and click on the “Donate to a walker” button. Search the team name “Keating Krushers” and then simply follow the prompts. You can also send a check made out to JDRF.
Our family thanks you for your support and prayers for Julia. She has been doing very well with her care and we are extremely proud of how she is handling this. We have set a family goal of $1500.00 and we will all be participating in the walk. If you live in Indiana and would like to participate in the walk with us please let us know so we can add you to our team. I know your presence there would mean a lot to Julia. The walk takes place on October 5, 2013, 10:00am at Military Park in Indianapolis.
Thank you for your support!
Tim, Becky Alec & Julia
About 6 months ago our daughter was diagnosed with Type 1 diabetes and at the time of her diagnoses the hospital told us about JDRF and their annual Walk For a Cure event. We’ve been looking forward to doing the walk ever since. Finding a cure is something that would change so many lives and JDRF does so much to raise awareness and funding for type 1 diabetes.
Our family will be participating in the walk this year hope to raise $1500.00 for JDRF. If you or someone you know has type 1 diabetes you are aware of how much work is involved to properly care for T1D not to mention the long term effects diabetes can have on someone.
Our daughter is so precious to us and we are very proud of the way she has been dealing with diabetes. I was talking with her today and asked her what would be the number one thing you would want people to know about diabetes. She said she wants people to be more knowledgeable about diabetes. In her opinion, people seem to think diabetes isn’t a very serious disease you just have to watch what you eat and give yourself a shot and you’ll be ok. There are a lot of great resources out there for people to learn about diabetes and I encourage you to take a look at some of the ones I have found to be helpful.
As parents, we want to give our kid’s the best life possible. One of the things we were concerned about is addressed in this video which has to do with giving our daughter more attention than our son. It is a balance and something we have tried to keep in our family. We have tried to make diabetes something we are all a part of. We include our son with our daughter’s care and take him to her appointments so he can hear and understand what she is dealing with. I’m really proud of him as he has tried to be a support to her and express understanding as to why we don’t have certain food’s anymore and have to stay away from certain restaurants because it causes our daughter’s sugar to go too high. They’re still brother and sister and have their arguments and fights but so far we’ve seen a good response from our son concerning his sister’s diabetes.
Families with Type 1 diabetes deal with a lot of difficulties. It’s a lot of work to take care of diabetes. In this video from the diabetes site, families share their emotional struggles with Type 1 Diabetes. I can certainly relate to many of these stories. We do worry about our daughter and her health and there are a lot of emotional struggles we have and and I am sure we will still have. All we can do is continue to support her and help her to learn good habits. She is amazing and has done so well which makes me very proud.
I came across a website that asks you to click on a button on their site and it will help raise money for Diabetes research. It’s called The Diabetes Site. I get A picture from them in my Facebook and click on the picture and then there is a link that will take me to the site. You can click on the site everyday.
Finding a cure for diabetes is of great importance to us as it would change our daughter’s life forever. She is strong and doing well but for her not to have to worry about diabetes would be amazing. Sites like The Diabetes Site are making a difference. I hope people will take advantage of this free and easy way to raise funds for diabetes.
Along with raising funds, we need to raise awareness. No one I know is doing more to help with diabetes advocacy then JDRF. Their efforts are making a difference from local governments to Washington. I intend to find a way to help out with diabetes advocacy in my local area.
If someone you care about has Type One Diabetes help out by visiting the Diabetes Site and get the word out about this disease that effects millions of people around the world.
Today we attended the JDRF Diabetes Today and Tomorrow Educational Conference. It was great to hear from professionals about treatment for type one diabetes and new developments on the horizon. Along with education, the time spent with other families dealing with the same thing we are was of great value.
One of the new innovative products that we came across was the iBG Star. It is a glucose monitor that connects to your iPhone, iPod, or iPad. The monitor uploads the results into your apple device through the iBG Star app. Not only does the app track blood sugar readings but it can also track carb. intake and insulin doses. The data can then be displayed in a graph so you can easily see trends in your blood sugar. The information can easily be shared with family members so that caretakers are always abreast of their child’s diabetes care.
The seminars were great as well. Dr. Jill Weissberg-Benchell was the keynote speaker who was very helpful in giving parents insight into dealing with diabetic children at various age levels. The information she shared was encouraging and hopeful. Dealing with highs and lows on a daily basis starts making you wonder if you are doing things right. Dr. Weissberg-Benchell’s insightful remarks helped everyone there remember that diabetes is a something that effects everyone differently and it is constantly changing. As care takers we need to be careful how we respond to our children when they have highs or lows. Accusing and blaming them for these things is the wrong way to help them.
The next session was a panel of teens who have T1D. They fielded questions from parents and were very articulate in sharing their thoughts with the group. It gave parents a little insight into the mind of a teen and how they deal with diabetes. I think it was also very helpful to the kids in the audience to hear from older peers who have dealt with diabetes for several years and find out that they can do anything they want. All of the kids on the panel were excellent in sharing about their experiences.
A few things we came with from the conference:
- Remember that your child is more then a person with diabetes. Sometimes as parents we can become obsessed with caring for our child’s diabetes and we always make that the first thing we talk about. “Did you check your blood?” “what was your sugar at lunch?” This should not be the first thing we talk to our children about. There is so much more to our kids than diabetes but we send the wrong message to our kids when the first thing we ask them about is their diabetes.
- Highs and lows are a normal part of diabetes. This is something that we’ve been told before but when you do everything the way you are supposed to and you still have highs or lows it is frustrating. Obviously consistently being high or low is not healthy and poor management of diabetes is not a good thing but, accepting the fact that blood sugars can change for any number of reasons and there is nothing you can do to change this helps to keep us a little more sane when it comes to dealing with type one diabetes.
- No matter how old our daughter is, as long as she is under our roof we need to always be willing to give her a break from having to manage her diabetes. I can’t imagine how it feels to have to prick my finger and give myself a shot every time I eat. Figuring out carbs. and doses and rotating my injection spots are things that I don’t have to worry about for myself. There are going to be times in our child’s life, whether they are 6 or 16, where they are sick and tired of dealing with all of this and they need a break. We can’t give them a break from having diabetes but we can give them a break from managing it. Figuring out their carbs, determining their doses, giving them their injections are all ways we can help them when the feel fed up and tired. I think this is especially important to remember when our children get older because we my start thinking they are old enough to manage their diabetes by themselves and shouldn’t need our help with those things. But, it’s not really that they need our help its just that they are tired of dealing with it and sometimes having someone else take care of it is all they need to get them through those times.
Well thanks to JDRF, Peyton Manning Children’s Hospital at St. Vincents, and the Lilly foundation for putting this conference on. It was inspiring and helpful to our family.
What an incredible breakthrough this type 2 & type 1 diabetes artificial pancreas would be. The doctor at the hospital was talking about this when we were there for our initial diabetes training. I don’t think most people understand how much work treating diabetes is. You can tell by the young ladies excitement in this video that this artificial pancreas would be life changing for her. The reason is not only that it would keep her insulin levels regulated but it would also allow her to live life without constantly having think about treatment.
The big question is how will people afford this. Treating diabetes is so expensive, especially for people who have no insurance or high deductible insurance and don’t qualify for assistance programs. For people in these situations, this incredible breakthrough is cost prohibitive. There are many people who have diabetes who’s workplace does not carry insurance for them so they have to get their own. Because of their income level, they make too much to get assistance yet they struggle to pay for the tremendous cost of diabetes.
I hope this breakthrough development in diabetes soon becomes available to the public as it will give people with diabetes a better quality of life. I also hope that by the time this comes out we have fixed the health care crisis in this country so that people can actually afford to have this.
As a family with type 1 diabetes we often come across people who don’t really know what diabetes is and how it effects people. Admittedly, I knew very little about juvenile diabetes before our daughter was diagnosed with it so I understand why people who don’t deal with it know little about it. My desire is to be an advocate for diabetes to help raise awareness. I want to do whatever I can to help find a cure for this disease that affects so many people
The JDRF website states the following statistics:
- As many as three million Americans may have type 1 diabetes. 1
- Each year, more than 15,000 children and 15,000 adults – approximately 80 people per day – are diagnosed with type 1 diabetes in the U.S.2
- 85 percent of people living with type 1 diabetes are adults.3
- The rate of type 1 diabetes incidence among children under the age of 14 is estimated to increase by 3% annually worldwide.
Having a child with T1D brings a lot of change not only for the child but really for the whole family. Managing diabetes as a family effects what we eat, where we eat, and when we eat. One of the things that really bothers our child is that she can’t eat what she wants whenever she wants and when she does get something she really likes she has to have a lesser portion than everyone else. It’s a struggle that I am sure most families have.
I think it is so important that everyone in the family be a part of managing diabetes care because it can effect the health of your diabetic child. We are their support group and we need to help them by considering their health before our wants. This really came to light for us a few weeks ago when we celebrated by wife’s birthday. We always make a cake for birthdays and so we did the same thing we always did. We figured out that the cake our daughter could have was to be about 2.5oz so I cut it and weighed it and it was not a very big piece. Of course our daughter was disappointed because it wasn’t as large of a piece as she used to get. My wife did something without saying anything and cut all of our pieces about the same size. My first thought was “hey I want a bigger piece” but I quickly realized that my wife was trying to show our daughter that we are in this with you.
There are also certain foods that make our daughter’s sugar spike. We’ve decided as a family that as much as we may like these foods, it’s not worth the damage it will cause our daughter if she eats it. The difficult part of this decision is that we have another child and want to consider their feelings in this as well. Is it fair that they may not get to eat something they enjoy because their sister has diabetes? Well, this is where I believe diabetes is a family disease. I recently spoke with another family who has a child with T1D. Their child is older and has had diabetes for several years now. In talking with the wife, she said she wished they had treated diabetes as a family. I think what she was saying is that they viewed diabetes as their child’s problem. Of course they do everything they can to help their child but they didn’t view it as a disease that should effect everyone in the family and they felt regret about that.
So, is it fair for my other child? Well the question my wife posed to me really helped me with this. She asked, “What is more important, eating certain foods or keeping our daughter healthy.” Don’t get me wrong, I wasn’t trying to argue that I want certain food and my daughter is just going to have to deal with it, but I guess, as a family, we just hadn’t thought about this yet. Obviously I want my daughter to be as healthy as she can be and I would do anything to make that so.
Life isn’t fair! This is a good lesson for everyone to learn. For some reason in our society today everything is supposed to be fair but the truth is life isn’t fair. So rather than worry about what is fair, we want to consider what is healthy.