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Children with diabetes and a walk to cure

Boxergirl

Well-Known Member
Those of you that have been on the forum for a while know that I have two children with Type 1 diabetes. My oldest daughter, now almost 25, was diagnosed at age 2 with a glucose level of 1066. We're very lucky that she's alive. If we had allowed her to go to sleep that night she would have slipped into a coma and likely not have woken up. My younger daughter, now 22, was diagnosed at age 12. Puberty is a common age for diagnosis.

Type 1 used to be known as juvenile diabetes. It's a whole other animal than the more common Type 2. Type 1 diabetes is an autoimmune disease. It happens when the immune system decides to attack the insulin producing beta cells in the pancreas. When this happens, the pancreas stops producing insulin. Insulin is necessary for the body to use food for energy. When we eat, glucose levels rise, and insulin is released into the bloodstream. The insulin acts like a key, opening up cells so they can take in the sugar and use it as an energy source. When the beta cells are destroyed, the pancreas no longer produces insulin and it must be provided through shots or with an insulin pump. The onset of Type 1 has nothing to do with diet or lifestyle. It does NOT come from eating too any sweets or drinking too much soda. There is nothing you can do to prevent it, and—at present—nothing you can do to get rid of it. Insulin is NOT a cure. While insulin injections or infusions allow the person to stay alive, they don't guarantee the prevention of serious side effects of the disease. Some of these are kidney failure, blindness, nerve damage (neuropathy), stroke, heart attack, pregnancy complications, and early death.

I can't speak for my children, but I can tell you that as a parent of children with diabetes - it was exhausting. And very expensive. There are no days off. Other people don't understand the disease or the careful balancing act it takes to manage it. If you don't live it, you don't know that for 20+ years I was up every two hours doing blood checks and am just now learning how to sleep again. (Sort of. Habits are hard to break.) That when someone sent their sick child to school and my child then got sick that there was no sleep for days because diabetics feel ten times worse than everyone else when they get sick. It's a ketone thing and a compromised immune system thing. That it's a horrible feeling when your child has a seizure because her insulin peaked when it wasn't supposed to or the day of swimming caught up with her at 3 am. That it's the most awful thing in the world when your seizing child takes in a breath - and doesn't take another. Glucagon saved her life that time. Sometimes I remember just wanting to finish reading my book. Or going to the bathroom. But my three year old was low or it was snack time. Or meal time. Or bedtime snack. Or 2am check. And if I felt like that I wonder how my child felt. Or how she felt when the birthday treats were passed out and the room parent skipped her desk. Not one time, but four times.

And say hey! Did you know there's a thing called "dead in bed" syndrome?
"Dead in bed syndrome (DIB) is a term used to describe the sudden unexplained deaths of young people with type 1 diabetes. The syndrome is characterized as when someone with insulin dependent diabetes has gone to bed seemingly perfectly fine and has been found dead in an undisturbed bed." - diabetes.co.uk

My children are here and they're healthy. My oldest, who has been diabetic for 22 years, has shown no complications. My youngest already has some problems and is meeting them head on. There are some very promising things on the near horizon for Type 1 diabetes. It's heartbreaking to see my oldest get emotional talking about the possibility of living a life she's never known. One without a minimum of six finger sticks a day, five or six shots a day, counting carbs, or worrying about going low while doing things others take for granted. I want a cure for my kids more than I can tell you, and I want a cure so that no other child has to live with this disease. So no other parent has to be afraid to put their child to bet at night or jam a huge glucagon needle into their five year old who has stopped breathing during a hypoglycemic seizure.

I'm not asking for donations for our team, although I will share the link to our team page and share pictures after the walk just so you can see my beautiful, strong girls. (And dogs. There will be dogs walking.) I'm looking for awareness and understanding. September is walk to cure month in many US states and November is Diabetes Awareness month. Please consider adding that $1 to your grocery bill this September to help fund a cure. Consider donating to a local walk team. If you can't donate, then participate in the walk. It's a pretty powerful thing when everyone starts walking at once. The support is just as important as the money.

Here's our walk page with a picture of my girls.
http://www2.jdrf.org/site/TR?fr_id=6974&pg=team&team_id=236004

Isn't their team logo awesome? We had t-shirts made for our team.

52588799664__1943D181-D780-48B5-B8F4-93C9DEC07212.jpg
 

Bailey's Mom

Super Moderator
Super Moderator
Those of you that have been on the forum for a while know that I have two children with Type 1 diabetes. My oldest daughter, now almost 25, was diagnosed at age 2 with a glucose level of 1066. We're very lucky that she's alive. If we had allowed her to go to sleep that night she would have slipped into a coma and likely not have woken up. My younger daughter, now 22, was diagnosed at age 12. Puberty is a common age for diagnosis.

Type 1 used to be known as juvenile diabetes. It's a whole other animal than the more common Type 2. Type 1 diabetes is an autoimmune disease. It happens when the immune system decides to attack the insulin producing beta cells in the pancreas. When this happens, the pancreas stops producing insulin. Insulin is necessary for the body to use food for energy. When we eat, glucose levels rise, and insulin is released into the bloodstream. The insulin acts like a key, opening up cells so they can take in the sugar and use it as an energy source. When the beta cells are destroyed, the pancreas no longer produces insulin and it must be provided through shots or with an insulin pump. The onset of Type 1 has nothing to do with diet or lifestyle. It does NOT come from eating too any sweets or drinking too much soda. There is nothing you can do to prevent it, and—at present—nothing you can do to get rid of it. Insulin is NOT a cure. While insulin injections or infusions allow the person to stay alive, they don't guarantee the prevention of serious side effects of the disease. Some of these are kidney failure, blindness, nerve damage (neuropathy), stroke, heart attack, pregnancy complications, and early death.

I can't speak for my children, but I can tell you that as a parent of children with diabetes - it was exhausting. And very expensive. There are no days off. Other people don't understand the disease or the careful balancing act it takes to manage it. If you don't live it, you don't know that for 20+ years I was up every two hours doing blood checks and am just now learning how to sleep again. (Sort of. Habits are hard to break.) That when someone sent their sick child to school and my child then got sick that there was no sleep for days because diabetics feel ten times worse than everyone else when they get sick. It's a ketone thing and a compromised immune system thing. That it's a horrible feeling when your child has a seizure because her insulin peaked when it wasn't supposed to or the day of swimming caught up with her at 3 am. That it's the most awful thing in the world when your seizing child takes in a breath - and doesn't take another. Glucagon saved her life that time. Sometimes I remember just wanting to finish reading my book. Or going to the bathroom. But my three year old was low or it was snack time. Or meal time. Or bedtime snack. Or 2am check. And if I felt like that I wonder how my child felt. Or how she felt when the birthday treats were passed out and the room parent skipped her desk. Not one time, but four times.

And say hey! Did you know there's a thing called "dead in bed" syndrome?
"Dead in bed syndrome (DIB) is a term used to describe the sudden unexplained deaths of young people with type 1 diabetes. The syndrome is characterized as when someone with insulin dependent diabetes has gone to bed seemingly perfectly fine and has been found dead in an undisturbed bed." - diabetes.co.uk

My children are here and they're healthy. My oldest, who has been diabetic for 22 years, has shown no complications. My youngest already has some problems and is meeting them head on. There are some very promising things on the near horizon for Type 1 diabetes. It's heartbreaking to see my oldest get emotional talking about the possibility of living a life she's never known. One without a minimum of six finger sticks a day, five or six shots a day, counting carbs, or worrying about going low while doing things others take for granted. I want a cure for my kids more than I can tell you, and I want a cure so that no other child has to live with this disease. So no other parent has to be afraid to put their child to bet at night or jam a huge glucagon needle into their five year old who has stopped breathing during a hypoglycemic seizure.

I'm not asking for donations for our team, although I will share the link to our team page and share pictures after the walk just so you can see my beautiful, strong girls. (And dogs. There will be dogs walking.) I'm looking for awareness and understanding. September is walk to cure month in many US states and November is Diabetes Awareness month. Please consider adding that $1 to your grocery bill this September to help fund a cure. Consider donating to a local walk team. If you can't donate, then participate in the walk. It's a pretty powerful thing when everyone starts walking at once. The support is just as important as the money.

Here's our walk page with a picture of my girls.
http://www2.jdrf.org/site/TR?fr_id=6974&pg=team&team_id=236004

Isn't their team logo awesome? We had t-shirts made for our team.

View attachment 59423

OMG GIRL, I knew, but I didn't know. I knew, but, even with a nephew who was diagnosed around 12, I still don't really know. Our family has been riddled with type II diabetes, but, my nephew's diagnosis took my brother and his wife into a consumed place, and not much info came out of that dark star. I have, in the past, sent hopeful information gleaned from the internet that I thought might help, but I have been rebuffed. My brother and sister-in-law went into a dark place and stayed there protecting their son. We get brief status reports.... There is a feeling that my brother feels that his child's sickness is his fault...somehow his fault and it is a pain he cannot share.

I hope..HOPE...that each of you reading this take some action by way of sending a few dollars on to help out. It may not seem like much, but...it is cumulatively a great amount of help. I live in London, Ontario, the hometown of Dr. Banting of Banting and Best, the developers of the insulin treatment that is still used today. Very little has changed since those early days. HOPE...hope is what people cling too while dealing with a precious child's illness, and we can help. Please make a small (or large) donation to help all these precious kids, and ALL THESE PRECIOUS PARENTS.

BOXERGIRL, You Are My Hero!
 
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glen

Super Moderator
Staff member
Those of you that have been on the forum for a while know that I have two children with Type 1 diabetes. My oldest daughter, now almost 25, was diagnosed at age 2 with a glucose level of 1066. We're very lucky that she's alive. If we had allowed her to go to sleep that night she would have slipped into a coma and likely not have woken up. My younger daughter, now 22, was diagnosed at age 12. Puberty is a common age for diagnosis.

Type 1 used to be known as juvenile diabetes. It's a whole other animal than the more common Type 2. Type 1 diabetes is an autoimmune disease. It happens when the immune system decides to attack the insulin producing beta cells in the pancreas. When this happens, the pancreas stops producing insulin. Insulin is necessary for the body to use food for energy. When we eat, glucose levels rise, and insulin is released into the bloodstream. The insulin acts like a key, opening up cells so they can take in the sugar and use it as an energy source. When the beta cells are destroyed, the pancreas no longer produces insulin and it must be provided through shots or with an insulin pump. The onset of Type 1 has nothing to do with diet or lifestyle. It does NOT come from eating too any sweets or drinking too much soda. There is nothing you can do to prevent it, and—at present—nothing you can do to get rid of it. Insulin is NOT a cure. While insulin injections or infusions allow the person to stay alive, they don't guarantee the prevention of serious side effects of the disease. Some of these are kidney failure, blindness, nerve damage (neuropathy), stroke, heart attack, pregnancy complications, and early death.

I can't speak for my children, but I can tell you that as a parent of children with diabetes - it was exhausting. And very expensive. There are no days off. Other people don't understand the disease or the careful balancing act it takes to manage it. If you don't live it, you don't know that for 20+ years I was up every two hours doing blood checks and am just now learning how to sleep again. (Sort of. Habits are hard to break.) That when someone sent their sick child to school and my child then got sick that there was no sleep for days because diabetics feel ten times worse than everyone else when they get sick. It's a ketone thing and a compromised immune system thing. That it's a horrible feeling when your child has a seizure because her insulin peaked when it wasn't supposed to or the day of swimming caught up with her at 3 am. That it's the most awful thing in the world when your seizing child takes in a breath - and doesn't take another. Glucagon saved her life that time. Sometimes I remember just wanting to finish reading my book. Or going to the bathroom. But my three year old was low or it was snack time. Or meal time. Or bedtime snack. Or 2am check. And if I felt like that I wonder how my child felt. Or how she felt when the birthday treats were passed out and the room parent skipped her desk. Not one time, but four times.

And say hey! Did you know there's a thing called "dead in bed" syndrome?
"Dead in bed syndrome (DIB) is a term used to describe the sudden unexplained deaths of young people with type 1 diabetes. The syndrome is characterized as when someone with insulin dependent diabetes has gone to bed seemingly perfectly fine and has been found dead in an undisturbed bed." - diabetes.co.uk

My children are here and they're healthy. My oldest, who has been diabetic for 22 years, has shown no complications. My youngest already has some problems and is meeting them head on. There are some very promising things on the near horizon for Type 1 diabetes. It's heartbreaking to see my oldest get emotional talking about the possibility of living a life she's never known. One without a minimum of six finger sticks a day, five or six shots a day, counting carbs, or worrying about going low while doing things others take for granted. I want a cure for my kids more than I can tell you, and I want a cure so that no other child has to live with this disease. So no other parent has to be afraid to put their child to bet at night or jam a huge glucagon needle into their five year old who has stopped breathing during a hypoglycemic seizure.

I'm not asking for donations for our team, although I will share the link to our team page and share pictures after the walk just so you can see my beautiful, strong girls. (And dogs. There will be dogs walking.) I'm looking for awareness and understanding. September is walk to cure month in many US states and November is Diabetes Awareness month. Please consider adding that $1 to your grocery bill this September to help fund a cure. Consider donating to a local walk team. If you can't donate, then participate in the walk. It's a pretty powerful thing when everyone starts walking at once. The support is just as important as the money.

Here's our walk page with a picture of my girls.
http://www2.jdrf.org/site/TR?fr_id=6974&pg=team&team_id=236004

Isn't their team logo awesome? We had t-shirts made for our team.

View attachment 59423
What shines through is the amazing mother you are and the love you have for your girls, theres a lot of diabetes in my family and with looking after my parents which had it i sort of know the intense feeling of having to do everything correct.
I will donate and i would love to have joined in on the walk. By the way your girls are beautiful you must be a very proud mum.
Can i please share your post over here
 
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Boxergirl

Well-Known Member
Thank you guys, but you have it wrong. *I'm* not the amazing person or the hero. The kids are. And my husband is. Because he worked many years of 7-12's or more in a mill so that I could stay home with my girls. He also never once complained that so much of my time was spent on the kids. There were very few times when something, anything, we tried to do alone wasn't interrupted for a diabetes related issue. He's a remarkable man and everything he does is for his family. I'm a very lucky lady.

Glen, you can share the post. Again though - I'm not soliciting donations for our team. Anyone who is so inclined, please go to the JDRF site and find a team in your area to support. No amount is too small. Thank you all.
 
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Boxergirl

Well-Known Member
One more thing, and it applies to everyone with a chronic condition. My girls weren't DIABETIC children. They were CHILDREN with diabetes. It's very important to remind people that the disease doesn't define the person. First and foremost my kids were kids. It seems like a small distinction, but it's not. It's hugely important.
 
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Boxergirl

Well-Known Member
The walk was great! We had wonderful weather. Probably the first time in many years that we didn't have to wear sweatshirts. The only one of my dogs that went was Roy. Al's anxiety is too bad for such a large event and Ella doesn't care for other dogs. Otis, my daughter's service dog in training, went too. The total raised by all the teams from our walk was $45,240. Our team raised $1425 and we plan to try to double that next year.
Here are some pictures. The front and back of our team shirt included. The back quote applies to a lot more than diabetes, so we felt it was very appropriate.
FullSizeRender.jpg
FullSizeRender(1).jpg
002.5 (2).jpg
004.jpg
Please ignore the warped face. Not everyone likes their picture on the internet, lol.
warp face team pic.jpg
FullSizeRender(2).jpg

I crocheted this for Roy to carry, but he insisted on carrying his heavy jolly ball for the entire walk. Silly boy.
IMG_5700.JPG

And lastly, this is one of the first walks we attended. That boxer is Ed with my youngest daughter.
2004JRDF2_zpsp1mlnitq.jpg
 

Nik

Well-Known Member
I love the photos and the shirts! Glad to hear the event went well. Such a cool crochet voodoo doll also. I understand the love of the jolly ball though both Diesel and Kahlua are obsessed with their jolly ball.
 

Boxergirl

Well-Known Member
I'm bumping this up as it's September again and our walk is just a few days away. I'm not soliciting donations for our team. But if anyone is so inclined, please consider adding the $1 to your grocery or Marshall's purchase if they ask. Please consider joining a team in your area and walking or making a donation to a local team.

As of right now, both of my girls are pumping. They have both upgraded to the Dexcom G6 continuous glucose monitor. This CGM doesn't require finger sticks for calibration. This is huge for my oldest daughter who has been doing 6+ finger sticks for 23 years. I can see what their numbers are at any given time through the Dexcom app. What I wouldn't have given to have that 20 years ago. It's things like this improved technology that make such a difference in being able to live life fully with a chronic disease. There are so many promising things on the horizon. Please consider supporting JDRF to find a cure. Thank you.
 

April Nicole

Well-Known Member
Thank you Boxergirl, you gave me a greater understanding of how diabetes affects the whole family. Your daughters are beautiful girls, they are intelligent, and seem very passionate as you are. And its wonderful that your husband is a great provider, and such an understanding man. You are so steadfast, and completely committed. I'm sure your family treasures you!

I love that you said my children are not Diabetic children, they were Children that have diabetes. You are so right! It's so important to not let the disease be what defines you.

Hoping for a great turnout, and lots of support.