Meet Jack {a special 5-year old friend}

This post is a little longer than I usually include, but some stories aren’t easily made bite-sized!

Isn’t this a handsome (I’d say beautiful, but he might not approve) young man?

This is Jack, an active and charming 5-year old with an abundance of interest and little boy curiosity. He goes to school and plays on a soccer team and has a full and very active life. He loves his mom and dad, his twin sister, Scarlett, and his cousins and grandparents, aunts and uncles and a big wide circle of friends.

But I’m not sure Jack knows how many, many people love him!

 

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I doubt he’s even once thought about how many of us have loved him since before he was born.

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Jack’s mom, Dani, has been an invited member of our family since she and Aimee formed a special and lasting friendship that first day of Kindergarten so many years ago. And in the blink of an eye, here we are in 2014 and Jack, Scarlett and our Karina are that same age.  Kindergarten is such an exciting time in a child’s life as they transition from total dependence on family and begin to form separate friendships, not to mention establishing a special relationship with their teacher.

For many children and their parents it’s the first time, when at least during school hours, there is a perceived sense of independence. Often it is a parent’s initial introduction to “letting go”  and for the child, an opportunity to experience space away from the scrutiny and security of home.

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Type I diabetes throws Jack a few additional curves.

It surprises me how often I hear people confuse the facts and fail to distinguish between Type I and Type 2 diabetes. No lifestyle or diet change   will “cure” Jack’s Type I diabetes (T1D). He was diagnosed at 2 years of age and with all of his mom and dad’s vigilant monitoring he still has times throughout each day and during the night when his monitor alarm signals a warning resulting in the need to test his blood. Ouch!

If you had read Dani’s letter sharing a descriptive snapshot of their daily life and dedication to managing Jack’s care (HERE) I have no doubt you’d have signed up to join Aimee, Sophia, Karina and me as we followed with Team Jack’s Jiants for last Sunday’s JDRF flagship fundraising walk/event at Angel Stadium of Anaheim.

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Dani, and husband, Mike, are very active fundraisers, spokespersons and supporters for JDRF-the leading global organization funding T1D research–together and individually volunteering hundreds of hours with support engagements throughout the year. For some of us, a once-a-year walk is the least we can do, and provides a time to reflect a bit further on what this disease means to children like Jack, and the many adults who have lived with T1D over most of their lifetime.

JDRF publishes these statistics;

  • As many as three million Americans may have T1D.
  • Each year, more than 15,000 children and 15,000 adults—approximately 80 people per day—are diagnosed with T1D in the U.S.
  • Approximately 85 percent of people living with T1D are adults, and 15 percent of people living with T1D are children.
  • The prevalence of T1D in Americans under age 20 rose by 23 percent between 2001 and 2009.
  • The rate of T1D incidence among children under age 14 is estimated to increase by three percent annually worldwide.
  • T1D accounts for $14.9 billion in healthcare costs in the U.S. each year.

At certain points along the walk route I really grasped the fact that each person, and there were multiple thousands at the walk, came in support of someone in particular. I paid a lot of attention to the messages and T-shirt tributes and thought about those individuals and their families.

 

Participants filled the stadium with hopeful energy. Even the dogs were encouraged to enjoy a quality day.

And it was a quality day. Team Jack’s Jiants raised more than $38,000 and that’s a considerable sum for one event.  And is there a reasonable expectation that research will lead to a cure?

Impressive bio-medical technologies offer hope in many areas. There is a race to produce the first artificial pancreas–one of my favorite t-shirts read, “Pancreas Shmancreas.”

Emerging results from stem cell research offer promising steps forward. Other technologies are nearing the clinical trial phase.

There is every reason to be hopeful that Jack, at only 5, will one day be able to manage his disease with simple and straightforward, non-threatening protocols.

I’ve previously written about another of our young friends, Aimee, and her experience with Type 1 diabetes. I have a dear friend from childhood who has spent a 60-plus year lifetime managing this disease. And then there’s Jack and his family who have taught me a lot about what it means to take those curve balls and throw them right back.

 

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I’m reasonably certain everyone knows at least one person hoping for a cure, and whether you can walk and support a team or not, we can all learn a little more and offer support in listening to what they might want you to know about their relationship with the disease.

It’s a lot to take in, but this was primarily a very hopeful event.

Recommended reading: One of the best articles about the differences between Type 1 and Type 2 diabetes.

 

 

 

52 thoughts on “Meet Jack {a special 5-year old friend}

  1. A friend of mine was diagnosed with Type 1 in her early 30s. She almost died because they diagnosed her as Type 2. Sadly, a year later her 10 year old son was also diagnosed. Both use insulin pumps. When I have lunch with her I know the routine. She is very vigilant. She has taught me a lot about the disease much of which benefits my diabetic cat. I hope they can find an easy way to manage or cure. She makes it look easy but it’s not.

    1. Thank you for sharing about your friend, Kate. I haven’t personally seen someone diagnosed as late as 30, but as you say, she may have been misdiagnosed for a long time. She was indeed lucky. We had a family friend have a stroke as a little boy because his symptoms were mistaken for flu, and he was actually going into a diabetic coma. It must have been very hard for your friend to then realize her young son was also affected. I think it’s a reasonable hope that a cure will be found in time to really benefit these young ones!

  2. SUPER post, Debra !
    In my solitude, I don’t know of anyone who carries this ghastly disease; but that doesn’t prevent me from feeling most keenly for anyone who does.
    And, oh, Jack ! – what a beautiful young man !

    1. Isn’t Jack just adorable, M-R? I think he’s such a sweet boy and he’s very fortunate to have his particular family. They have completely devoted themselves to his care and as a result, he leads a very happy, typical five-year old life. But to know that they haven’t slept through an entire night in three years is really daunting. I think a cure, whether in the form of an artificial pancreas or a drug implant that “does the trick” may not be too far in the future and I like to think that Jack will benefit from some of these amazing advancements. Thank you for stopping by and admiring this sweet little fellow. 🙂

  3. dandyknife

    Wow, $38K could buy an awful lot of Silly Putty and Batman comics. That fund-raising event wasn’t just a walk in the park! Congratulations, and good luck to little Jack.

    1. What a nice way to visualize all that profit, Dandy! A little boy’s dream loot, for sure. JDRF raises money in events like this all over the world–at least I think it’s international–and there was a lot of positivity at this event. It would be very thrilling to realize a cure. Jack is a very resilient little soul, but I sure do hate to think of him have any limitations at all. The walk was a really nice way to spend time with his family and to see how many people care about them!

  4. Nothing like a personal touch to promote an important cause. You know … there are many important causes, but the ones that touch us the most are the ones that are close to us in some way. Whether it’s through knowing someone directly (as in this case) or being impacted through a local event (such as Lauren Hill & Leah Still for me), the stories need to get out … so well done, Debra!

    1. Thank you, Frank. It’s true that our hearts often align with our “pocket books” or time commitments. We have had several friends through the years with very dramatic stories associated with Type 1 diabetes and so it happens to be a “close to home” concern. There were so many people also supporting someone they loved and the walk was a time for all of those families to feel less alone in their daily struggle. I’m glad I could share little Jack’s story. He really is a special little guy to us. 🙂

  5. An important event to draw attention to this incurable (and frightening) disorder. Type I runs in my family. (My father has Type II.) They are very different. My cousin was rushed to the hospital multiple times growing up. Insulin comas. I hope Jack and other people like him will be given a way to manage this in my lifetime. Wish I could’ve been there.

    1. Hi Andra. So nice to hear from you. It is a frightening disease and to those who have it, and to their families. One of my son’s closest friends went into a diabetic coma when the boys were in 3rd grade. His symptoms were masked by the flu and he had never been properly diagnosed. He had lifelong impact from those early strokes and at the time I had never imagined such a disease could silently creep up like that. There is amazing research yielding very strong promise for a cure in the future, and potentially the near future. I hope for that. Thank you so much for sharing about your family. I really do think it’s likely almost everyone has someone close to them with this disease. ox

  6. Danielle LaBriola

    This made me cry. Thank you for writing such a nice article about us….and thank you for always being so supportive of my family and of Jack. It is so important to educate people about this disease. It is much harder than many realize and that is why we are so desperate for a cure. I will read this to Jack before he goes to bed tonight. xoxoxo

    1. You know, Dani, I go back a long way with others who have T1D and thought I was pretty well informed, but I have learned a lot about this disease through watching how you care for Jack. I really admire how you have expanded your care for him to include a commitment to others who are in this same circumstance. We love you and Jack, and it isn’t hard at all for me to believe that there will be a cure. I spent quite a bit of time reading about some of the advancements being made and the potential is very promising and I believe not that far off. I am so glad you were pleased with the way this was written. I have a ton of photos for you…most couldn’t be used on the blog because I didn’t want to post photos of your friends without their permission. I’ll get them to you. It was a very lovely, hope-filled day. Special hugs to Jack and Scarlett. They are so precious!

  7. What a gorgeous boy and I love his bike helmet. How sad that having been diagnosed at such a young age, he won’t have any memory of not having the disease. It’s amazing that in this day and age, there still isn’t a cure. When I was nursing I worked on the diabetic ward for quite some time. It was then I realised how treating the disease isn’t as simple as just having an injection once or twice a day – it’s 24/7 of having to watch what you eat, eat at regular intervals, watch how much exercise you do etc, etc. We really do need a cure for these poor sufferers xx

    1. I’m glad you commented on Jack’s helmet, Charlie. It is such a “boy” helmet and shows how active and typical he is despite the restrictions that come with the disease. You do have a good working knowledge of diabetes if you had that nursing experience. I think it’s a very easily misunderstood disease because so often the men, women and children have learned how to discreetly manage their protocols in public and the pumps also help. I’ve had lunch with my friend, however, and watched her have to check her numbers multiple times during just one meal and that’s just a small factor in all that she must monitor. I think it’s very possible, if not probable, that some kind of a cure or major breakthrough in patient care is going to be coming soon. It is a hopeful time. Thank you for sharing your experience, Charlie.

  8. Oh, Debra, what can I say? Just thank you; for supporting JDF and Jack, and for writing so beautifully about Type I Diabetes. As you know, Tom is a life-long “member of the club” and has been involved in JDF and in camps for children with diabetes. We remain hopeful that a cure, or at least better management tools, are a round the corner. I will send him the link you include. It is very well written and brings managing sugar levels to an understandable point. Thank you, Debra.

  9. When I saw the t-shirt labeled “Tom’s Angels” I thought of your Tom, Penny. I think my good friend Pam must be about the same age as Tom and I’ve known her since we were young girls. I see how as we are aging she has additional hurdles that come because of this disease. I am quite hopeful about a cure, or as you mention, better management tools. From what I have been reading it just feels like breakthroughs are imminent–so close. Jack’s mommy offered me the article about the distinction between Type 1 and Type 2 and I thought it was just excellent and I hope it can be useful. I think it’s great that Tom has been involved in camps for children with diabetes. It must be very encouraging to a young person to see an adult with the same disease and to find that common bond. I know Jack’s parents are very involved in volunteering their time and energy to support the cause, and it’s interesting to watch how this disease and their child’s circumstances are really shaping their lives in ways they never could have foreseen. They are really wonderful people. I’m glad you had the chance to meet them, Penny–in particular handsome young Jack. 🙂

  10. Thank you for sharing this Debra. Just yesterday I read a few tweets about managing T1, so this is really timely! Maybe you knew it was in my head? 🙂
    Jack is a lucky boy to have such a strong support network, and fabulous family & friends.

    1. November is Diabetes Awareness month so maybe that’s why the discussion is a little more lively right now! 🙂 I couldn’t agree more about Jack’s support system. He has a wonderful family who have made it a practice to really care about their friends, and in return, others are there for them. It was lovely to witness!!

  11. Thank you Debra! I have a friend and a nephew in law who have T1D. The more awareness the better! I think love is what will end up finding the cure for this, and other horrid diseases. The push and push and efforts to find answers is powered by it.

    1. We really felt energized by the community of people surrounding the JDRF walk and a renewed sense of optimism. Little Jack is such a sweetheart. I’m sure you’ve also felt the concern for your nephew. I am hopeful that a cure is just around the corner!

      1. My hope is with yours. It is so horrible. My friend has lived with it for over 60 years. And she has done a fabulous job of it. Her parents were brilliant in their handling of the disease and she grew up knowing what to do and not do. In addition to new technology she also does a few “old school’ tracking methods. It has all worked well. But a cure would be …..oh so wonderful!

  12. Such a good post, Debra, and well done to young Jack and all concerned in that amazing fund-raising effort. My first contact with type 1 diabetes came when the 21 year-old son of a library colleague started to lose weight very quickly, then collapsed and was taken to hospital as an emergency. It was such a shock to him and his widowed mother and it was hard to learn how to manage his condition. This was in the days before insulin pumps, so he had to cope with all the daily injections. The research you refer to looks very promising and like you, I feel science is probably close to a breakthrough on the treatment of this type of diabetes.

  13. Oh bother! I just wrote a long comment and the system appears to have eaten it. 😦

    This is such a good post, Debra and I learned a lot from it. Well done to young Jack and to all who contributed to this splendid fund-raising effort. My first contact with type 1 diabetes was the 21 year-old student son of a library colleague who suddenly started to lose weight for no apparent reason. One day he collapsed and was taken to hospital as an emergency where his diabetes was diagnosed. It was such a shock to him and his widowed mother and I know he found it hard to adjust to managing his condition, especially when the only option was daily injections.

    I found the research you referred to very exciting and like you feel that science may well be at the point of making a breakthrough in the treatment of this difficult and dangerous condition.

  14. Oh bother! I just wrote a long comment and the system appears to have eaten it. 😦
    This is my third attempt to comment here, so I hope it gets through.

    This is such a good post, Debra and I learned a lot from it. Well done to young Jack and to all who contributed to this splendid fund-raising effort. My first contact with type 1 diabetes was the 21 year-old student son of a library colleague who suddenly started to lose weight for no apparent reason. One day he collapsed and was taken to hospital as an emergency where his diabetes was diagnosed. It was such a shock to him and his widowed mother and I know he found it hard to adjust to managing his condition, especially when the only option was daily injections.

    I found the research you referred to very exciting and like you feel that science may well be at the point of making a breakthrough in the treatment of this difficult and dangerous condition.

  15. This is at least my fourth attempt to comment here. I’ve cleared cache and cookies and hope it works this time. What’s odd is that I’ve managed to comment successfully on another WP blog just now.

    This is such a good post, Debra and I learned a lot from it. Well done to young Jack and to all who contributed to this splendid fund-raising effort. My first contact with type 1 diabetes was the 21 year-old student son of a library colleague who suddenly started to lose weight for no apparent reason. One day he collapsed and was taken to hospital as an emergency where his diabetes was diagnosed. It was such a shock to him and his widowed mother and I know he found it hard to adjust to managing his condition, especially when the only option was daily injections.

    I found the research you referred to very exciting and like you feel that science may well be at the point of making a breakthrough in the treatment of this difficult and dangerous condition.

  16. Perpetua

    I’ve lost count of how many times I’ve tried to comment here. I’ve cleared cache and cookies and am now trying with my WP account to see if that works. I see my comments on your previous 3 posts aren’t showing either. 😦

    This is such a good post, Debra and I learned a lot from it. Well done to young Jack and to all who contributed to this splendid fund-raising effort. My first contact with type 1 diabetes was the 21 year-old student son of a library colleague who suddenly started to lose weight for no apparent reason. One day he collapsed and was taken to hospital as an emergency where his diabetes was diagnosed. It was such a shock to him and his widowed mother and I know he found it hard to adjust to managing his condition, especially when the only option was daily injections.

    I found the research you referred to very exciting and like you feel that science may well be at the point of making a breakthrough in the treatment of this difficult and dangerous condition.

      1. Oh you poor thing! You must have felt so claustrophobic all trapped in that filter. You’ve been freed! LOL! I’m so glad you let me know. What a pain. And a good reminder to me to be more aware of that filter. Now I can spend some time reading all your comments from weeks ago! 🙂 Thank you for letting me know…and patiently making additional attempts! ox

      2. I have learned quite a bit myself since writing this post, Perpetua. You are the third person to mention knowing someone diagnosed with Type 1 as an adult. I have only known diabetics diagnosed at a much younger age. I have known children who were undiagnosed far too long and had devastating results, like stroke. It is a more serious disease than many think. I do pray for a positive outcome for our little friend Jack, and feel very hopeful about the potential medical breakthroughs. I’m so glad you successfully left a comment! It was so nice to hear from you!

  17. Thank you for your support for Type 1 Diabetes. I hope that research now being done will result in a cure for Jack and all the other young ones who suffer with this disease. And in the not too distant future. I was diagnosed with adult onset Type 1 in 1990 when I was 49. Even the doctors didn’t know I had Type 1 back then and it took several years before I was properly diagnosed. I wear an insulin pump and check my blood sugars 7 to 10 times a day, depending on what kind of day I have. There’s never a day, or hardly ever a moment even, when I can just relax and forget about having this disease. It took 25 years before the first signs of complications set in, my feet getting painful and numb from neuropathy. And as I get older it is becoming more and more difficult to control my blood sugars, thus increasing my fear of blindness and all the other crap one can come down with thanks to this relentless disease that effects every organ. You can even lose your hearing, for heaven’s sake. OK, enough of my ranting. Thank you again for caring and for this very informative post. And thank you for introducing us to Jack. God bless you Jack and I hope those good scientists will come up with something to cure you real soon.

    1. Inger, you’ve mentioned your diabetes before and I had no idea you were diagnosed as a mature adult, and with Type 1.I’ve never known someone with that kind of delayed time bomb. You must have had a very difficult adjustment, and I am so sorry to know you are experiencing increasing physical challenges at this time. It really is a very difficult disease to manage and I think many people don’t understand it. I do hope and pray for major medical breakthroughs that will dramatically simplify management and minimize the effects on the body. Wouldn’t that bring such relief to so many. I’m really pleased I was able to share a little of Jack’s story and thank you so much for sharing yours.

  18. I’m another of those luckies who’s had little or no contact with this illness, Debbie, and feel quite ashamed of myself at grumping over a few aches and pains. You’re right- he is a lucky boy to be born into a family with the will to do something towards changing their son’s future. And he looks like a grand little chap! Many thanks to you for sharing their story. 🙂

  19. I hope that one day very soon Jack and many others living with T1 can overcome this. So glad to hear people are hitting the pavement with this and that their love and dedication will transpire into a cure in the lab very very soon! Courage little Jack, may you grow healthy and strong!

  20. Wow Dear friend loved reading about Jack and seeing his picture you have such a big heart and that is wonderful Yes it takes so much Courage for this Little Jack you would not know it to see his smiling face. Thank you for sharing your story. So glad they are searching for a cure and that Jack will grow up and be healthy and strong.

  21. Beautiful post. My uncle is type 1. Losing his vision now that he’s in his 50’s. We also know a boy at the kids’ school. JDRF is certainly a worthwhile cause. I do hope they discover some new insights and solutions through their research. It’s not an easy illness to manage at any age. Thank you for raising further awareness Debra!

  22. I think you are very right about the fact that there are much miss-conception about T1D. All the more important to bring out both the facts and the human side of the disease. You have written a beautiful post about Jack and what he is struggling with in a way that still shows him as a boy like any other. He seems to be a great, little guy.

  23. Beautifully written. Our grand-daughter and her husband are the substitute pancreas for their youngest son, also 5. We are so proud of them all as they are all handling it so well. Our daughter is a good grandmother too, who can take over occasionally to give them a break. I don’t know whether I could have done all that they do… The testing, the injections, keeping careful track of the food intake …. Raising kids is had anyway and with this added and still cheerful. I am so incredibly impressed with them all.

  24. To me there’s nothing more heartbreaking than a child having to be put through a horrible disease like this one. What’s amazing, though, is the upbeat spirit it sounds like Jack has.. and his parents as well. That family is so strong and confident, with events like these we should be well on the way to finding a cure or new treatments. It’s so good at this time of year to remember those who have a tougher time than us. Not being able to just simply sleep through the night is tough on a growing child.

  25. Pingback: {valuing friendship and community during the busiest season–it’s JDRF time once again} | breathelighter

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