Open Letter to the FDA: Here’s my “shocking” number to ponder: One in a Million

November 17, 2011By 39 Comments

Before you read this, please remember that I am a huge advocate of JDRF and all they do. In my humble opinion there is no machine with more power and a better constructed engine chugging toward the cure (and yeah, better treatments) than JDRF. This blog post in no way means I think any less of them. I say this because sometimes I think we’ve all gotten too touchy and lost touch with the fact that sometimes – most of the time – varied insights help things. So in other words, I’m not questioning their “1 in 20″ ad. Rather, I’m adding another angle to the same effort.  I hope you’ll read this, consider my take and sign on at the end, adding your “one in a million” (or in some cases two or three in a million) to this post. Yours could be yourself, your child, a friend, my child, a parent. Let’s get a long list of “one in a millions” to share. Thanks.

 

 Dear FDA:

Hi, I’m Moira. I’m not a powerful agency, but I am part of a powerful advocacy group that you probably know of – I’ve been a proud member of JDRF for years and years now. However, that’s not all I am. If you look closely, I am an individual human being, with my own individual reasons for wanting you to accelerate the progress of better treatments for diabetes; particularly, the “artificial pancreas project,” as we’ve all come to call it.

I know you probably saw the “1 in 20 statistic” in the NYT and WSJ ads. Well, here’s my personal shocking statistic: One in a million.

As in, my daughter Lauren, who has had Type 1 Diabetes for more than 14 of her 20 years of life, is a one-in-a-million young woman. It’s not just her drive and ambition (she’s at George Mason U, majoring in communications and politics and minoring in non profit studies). Nor is it just her incredible sense of humor; or the way whenever we go anywhere that has a microphone involved, she always seems to be the one who ends up at the mic – with a crowd roaring along with her. Yeah, she’s one in a million that way, but she’s one in a million in her diabetes experience too.

My one in a million gal with her Dad.

That’s because every single person who has Type 1 diabetes has a unique experience with it. For some, it’s crazy lows that confuse and even hospitalize them, like my friend Pam Sagan told you in a recent hearing. For others, it’s the difficulty of blending life as a mom or a teacher or a CPA or whatever with keeping on top of diabetes. For my girl, it has included rough times and easier times; scary times and relatively okay times. I argue that it should be enough that my one-in-a-million deserves the best tools we can offer her in her life with diabetes. I’d like to share with you a peek into her one-in-a-million life.

*When she was 15, Lauren was one of the first kids in America to go on a CGM. It wasn’t part of a trial; we did it on our own (she was the first young kid in Boston to go on a pump years before that – we have worked to be innovators and leaders from the get go of this disease in our lives). I noticed right away the benefits to the CGM and pump (or so I thought). I could work with “averages in range” better – something that APP Guru Dr. Aaron Kowalski says will some day perhaps replace the A1c test in importance. I could fine tune her basal rates and keep her in range better. This is what I didn’t realize: the little ways it would make her life better.

One day we were driving along in the car. She was sort of mindlessly staring at her fingernails and hands. Suddenly she broke into a huge smile and started doing a kind of “spirit fingers” with both hands,

“Oh my Gosh, mom!” she said with more enthusiasm that teens usually show. “My fingers! I have never seen them without calluses and holes in them!”

I could have cried. Talk about the simple things. A CGM meant “only” checking about three times a day with a finger poke. To mean that meant less effort. But to my one-in-a-million, that meant the simple joy of looking down at her hands and not seeing evidence of chronic disease. Isn’t that kind of pure joy, so easily found via the approving of tools and technology, worth your extra effort?

She stopped using her CGM, and she awaits a better one to come along and give her fingers a break again. She hated that it was two things attached to her body. She hated the scars the large insertion needle left on her. She craves a newer model that is sleek, smart and easy to use. That’s only going to happen if you help it happen.

*Like most young woman, my daughter looks forward in life and wonders. Unlike most young women, though, she wonders if she’ll ever have the strength to go through pregnancy with diabetes on board. “I just don’t know if I’ll ever be able to do that, Mom,” she says of the hard work a woman (and her partner) must go through to have a healthy baby when you have diabetes. Yeah, everyone says “you can absolutely have a baby now,” but do you, FDA folks, have any idea what that means? A good, smart pump could solve a lot of that. I want my daughter to see a clear path in technology and approval of technology that shows her down the road, there will be tools for her to take on that challenge without as much stress and hard work (and possibility of not getting to where you want to get) as there is now. You could help me say to her, “The time, and the product, is coming. No need to fear.”

*When she was little, she was always one in 800 at her school – the only kid there with Type 1. Then another girl was diagnosed, one she had never really been close to. When I told my still-little daughter about it, her knees literally buckled under her. She steadied herself and then said “I have to help her.” I told her that just because the other girl had diabetes now, she did not have to befriend her. My still-little girl looked at me with the eyes of a wise woman and said “She needs me Mom. I have to help her.” And she was right. She deserves better tools because she helps everyone she can, every day, even when she is struggling herself.

Lauren and her good friend -- okay boyfriend -- Nick. Her one in a million-ness means we're glad he's a guy who gets diabetes and respects it.

Those are just a few stories. There are many more about my one-in-a-million girl. I tell you because while I fully understand there was a need to get you to listen to the diabetes world with the 1-in-20 claim, I wish I lived in a nation where the health, happiness and prosperity of even one person in a million would be reason enough to help make better tools for medical treatment a reality.

And perhaps I do. Because here’s the thing: there are a million – or more – one in a millions out there. Each has a story. Each has a personality. Each has dreams. Each is tied to you – FDA folks – and the power you have to move things along to a better way of living.

One in a million. I know it’s not sexy and I know it’s not shocking; but it sure is meaningful to me. Here’s hoping it is to you as well.

Read on to the comments for more “one in a million” examples (and here’s hoping people will share them here).

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Comments (39)

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  1. Jaimie says:

    amazing post…

    • Vangelia Perryman says:

      My one-in-a-million is Connor Shae, my Cman. Thanks Moira for speaking out, once again, for us. 1 in whatever number is still 1 too many!

  2. My one in a million is my 8-year old son Jacob who was diagnosed at 6 years old. He is such an active healthy kid who loves winter! He plays to play hockey, to skate on the frozen Mackenzie River in the Arctic, to snowmobile, to cross country ski, to go dog sledding and mushing, to toboggan and to snowboard. He has many dreams for his future, one is to be a pilot. He is the light in any group setting, always the kid everyone wants as a friend, he is happy!!

  3. Lucy Grubbs says:

    My girls hmm I now have two girls with type 1 and so that’s not one in a million with no family history. We are just average people trying to survive in this world. And to add type I diabetes to our lives is a struggle every day. I have taught my girls they can be anything they wan to be but I do always keep in the back of my mind, what if something goes wrong when they are away. Always wishing hoping for a cure. And we do use a cgm and the girls while they like the benefits hate two devices to be attached. Since they both use pumps. So you can imagine our family costs with two teens with type one

  4. Krista Middleton says:

    Call me “Two in the Million.” I’m a type 1 diabetic, a teacher, a sister, a daughter, a wife, and a mom to two little boys. I’ve been a type 1 since I was 21 months old. My parents woke to the sound of me “howling like a hurt animal” in my crib. That was over 26 years ago. Over 37,960 insulin injections and 56,940 glucose tests later. I’m the girl who often loses hope of my future because of lies of cures that my parents and I were promised over 2 decades ago. My parents can still hear the doctors telling them “a cure will be found within 10 years.” That was almost 30 years ago.

    Pregnancies as a diabetic? Can’t be too hard, right? Imagine 2 ultrasounds every single week of your pregnancy from your third month of pregnancy until you deliver. Imagine being told “you have to have a c-section for the safety of you and your child.” Imagine feeling perfect, then suddenly you stand up and begin to go comatose. Imagine your husband finding you on the floor having a diabetic seizure simply because your body cannot get used the the hormonal changes that are happening because of the baby inside of you. Imagine high blood sugars that leave you nauseated and so incredibly thirsty, yet unable to feel any better because it takes insulin so long to start to work. Imagine have no answers to the millions of questions you have. I didn’t have to imagine, I did all of this…twice.

    Thankfully I have had both of my children, and survived both pregnancies. Unfortunately it has been a year and a half since I had my youngest and I am still having blood glucose issues. I will be walking into the kitchen and collapse. Blood sugar reading “low.” My glucose meter won’t even read a number. My oldest son, who turns 4 tomorrow, has found me unconscious on the floor and began hitting me with a whisk to try and revive me. If my son hears an ambulance he asks “Mommy, is it coming for you?”

    My brother was 3 the first time he called 911. My son is now 4. I am waiting for the day when he might walk into the room and I will be unconscious. Imagine the thought of your child being the one to find you unconscious or possibly dead. Its a thought that goes through my head daily. I try so incredibly hard to do my best and sometimes that is not good enough. Sometimes we need the help of the FDA to help make lives possible. I might just be number two in a million, but to my family I am irreplaceable and I am their number one. Please help us keep it that way.

  5. Rachael says:

    My son is my 1 in a million…

  6. Maureen says:

    Dear FDA: My kids are two in a million. They both are molecular biology & biochemistry majors at Middlebury College, they both love to ski, both play on the Middlebury Ultimate Frisbee team, and they both manage to do all this with Type 1 diabetes. It amazes me how much they accomplish while juggling Type 1 issues.

    My son told me a story the other day about how he has been doing independent research with a professor in a lab where no food is allowed and how he’s been struggling with lows. Sometimes he can feel a low coming on and he’ll be right in the middle of an experiment which he invariably tries to get to a good stopping point before going outside the lab to get some food. Each time he totally screws it up because he can’t think clearly enough with a low to successfuly complete this kind of intricate work and has to start from the begining each time after treating the low. He doesn’t really have enough time built in his day to keep doing the lengthy complex procedures over again. He’s one in a million but better tools to manage his diabetes would surely help his research.

    Recently my daughter was just sitting in her dorm room waiting for her blood sugar to come back up enough to continue studying for the next day’s chemistry exam. She hadn’t built time into her busy schedule to just sit and recover from a low. She sent me a text that said only “diabetes is ruining my life” – a little dramatic but college life sure would be easier if she had better tools to manage her diabetes. She’s also one in a million.

    There is never enough time in a college students day. Please help them have better tools to manage their diabetes so they can complete thier studies and research without continually stopping and waiting for thier blood sugar to come back into a range where they can think clearly.

  7. jojo211 says:

    Thanks for your “very real” post. I was 12 when diagnosed and that was 35 years ago! Things are better now than ‘back then’ but seems far more advances should have been made. Moira, I’ve had 2 very healthy babies, and have never let this disease stop me. Played sports, hiked Mt.Washington twice, exercise regularly and,very simply . . . remained ACTIVE. However, there have been the scary experiences. Home alone with a newborn baby, passed out, but fortunately for a friend that called my house that day my 3 year old answered the phone to tell them “mommy is on the floor”. My friend heard the baby screaming in the background so called 911 and my daughter was there to let them in. Or, the time I was on a business trip and I never showed up for the morning meeting . . . they checked my hotel room where they found me unconscious, and when arriving at the hospital I had no brain activity! I had some long term effects from that episode, but fortunately I recovered. I take care of myself, but I still need more . . . Dear FDA, please Help!!

  8. Beth McCrary says:

    My one in a million is my 10 year old daughter, Hannah. She has been living with Type 1 Diabetes since August 21, 2008. She is bright, funny, and full of life. Diabetes hasn’t slowed her down one bit and it is our hope that it never will. We know that approval of the artificial pancreas will be another tool to help prevent dangerous lows and highs that can lead to complications or death. How can the FDA not see the urgent need?

    • Paula Fairchild says:

      So thankful to know you, and be able to work alongside you, with JDRF, pushing for a cure.. pushing for research.. urging the FDA.. so that your Hannah, my Emilee, and the thousands of others, can HOPE for a better tomorrow, a life without diabetes… Although I am sure each of us would take this from our children if we could, in the blink of an eye… what an honor it is to know you, and the countless others who share our passion for a cure… and be able to share our experiences, lean on one another, encourage each other, and work together for a cure.

  9. Debbie Garelick says:

    Sam Garelick is my one in a million man. 11 years with Type 1 and really wants to “quit this disease”. When he was 4 and was newly diagnosed till this day I want to change places with him and let him have ONE DAY without a single poke.
    But he has a sense of humor and a gentle presence. And a smile to knock the socks off of any 15 year old girl :D

    Love you baby!

  10. My one in a million is my 14 year old daughter Ceara! She was diagnosed 2 1/2 years ago. She doesn’t let it get her down! She was captain of her JV ice hockey team last year even though most of the girls were in high school and she was in 7th grade. She was president of her 6th grade class and this year she was voted most positive on her middle school field hockey team. She also plays on a club lacrosse team and all star girl’s hockey team! Ceara always has a big smile on her face and never has a bad word to say about anyone. She is my hero! I wish I could be more like her.

  11. Holly says:

    that’s my one in a million best friend!

  12. Lisa Dorminy says:

    My one in a million is my daughter Destiny , she was 5and 1/2 when she was diagnosed in June 2010. She is a very happy little girl with a big beautiful smile . She loves to ride her bike, do gymnastics and just be a 7year old little princess. She has never been a wonderful eater and we battle lows all the time. She was placed on the pump to help control that and allow her to eat when she is hungry . I want her to be able to do everything her little heart desires without this disease getting in the way .

  13. Katie says:

    My one in a million is my 28 year old son, diagnosed at 10. I am still waiting to see if he will manage to successfully overcome all the hurdles Type 1 Diabetes has placed in his way. He’s doing well, but it has been a struggle since he hit his late teens. I wish for better tools that didn’t cost so much. I wish for health insurance that didn’t cost $375 a month and have a $5,000 deductible with no co-pay for glucose test strips. Did you know they cost 50 cents to a dollar EACH? And our kids are supposed to test at LEAST 4 times a day? No wonder that many, like my son, do not test that often.

    My son is very intelligent, musically gifted, compassionate and athletic. He has everything going for him, in many ways. Diabetes is hard enough without unnecessary hurdles of expense and tools that could be improved. Sometimes just dealing with diabetes is one thing too much.

    Reading the posts above, I realize that ALL of our “one in a million” special people have loving, caring hearts. If only they could get one tenth of that love and care back from those who decide how to fund research, it would be a miracle.

  14. Lisa Parker says:

    Riley is my “one in a million.” He was diagnosed 2 years ago at the age of 3. He loves soccer, playing with his dogs, and wants desperately to have a sleep over at his best friend’s house. He is my hero and inspires me every day with his courage and kindness. Our hope is always for a cure and/or ways to better manage this disease. Thank you, Moira.

  15. Grace says:

    My one in a million is smart, spirited and beautiful. She was diagnosed July 20, 2007 at age 10. She educates and advocates on a daily basis. She takes great care of herself and worries about all the choices she must make now and in the future. She doesn’t let diabetes define her– but yet it does because it never goes away. I dream of a day when she is free of this disease, but in the meantime new technology can make it much easier to live fully and give to the world. FDA — We expect a great Christmas gift– some reasonable guidelines for the Artificial Pancreas. (thank you moira for bring all of us together.)

  16. My one and a million is my daughter Samantha. She is now 12 was diagnosed at age 6. She uses a pump but still needs to take Metformin just to keep her numbers under 400. We have always told her she can be anything that she desires. She is extremely bright and intellengent in both math and sciences. Her dream is to go onto outer space, become an aerospace engineer. My dream for her is to just live a normal life without worry about lows, highs, ketones and DKA. When telling her my dreams for her, her reply is always that God will only give us burdens he knows we can bear, so God trusts us with this burden. This has been her response since diagnosis at the tender age of 6. Many people will ask me who is my hero. My hero is my one in a million. Please help my one in a million and all of our own one in a millions. They are all our own “sweet” heros. Mommy loves you Sami !

  17. Jorie says:

    My one in a million is my Lydia. A year ago, she walked into the ER in her skeleton jammies and sparkly Hannah Montana flip-flops. She was an innocent child and we were her carefree parents. We walked out a changed family. We walked out into the arms of an ugly disease.

    Perhaps the consolation that “she’ll never know any different” has some truth to it, but my one in a million sure notices that her friends’ fingers aren’t calloused, that they don’t have to call it quits in the middle of gym class because they feel low, and that she’s the only one in her dance class with a little bulging life-support under her leotard.

    My one in a million faces some pretty daunting statistics in the course of her lifetime. The FDA is her life support, and I’m counting on them to get it right.

    Thanks, Moira.

  18. Darlene says:

    My daughter Emily age 17 is my one in a million. She was diagnosed with Type 1 diabetes at 6 years old. Back in those days It took her over a year for her to overcome her fear of injections. It would sometimes take over an hour to inject her insulin 3-4 times per day due to her extreme fear of needles. The fear of needles is no longer an issue but the fear of long term complication is now the real fear. Emily and her family have been through too many Highs,too many lows (blood sugar that is),keytosis, the teen age, “I don’t want to deal with this anymore” denial, the outrageous expense of supplies and medication, the many middle of the night blood sugar checks, the fear Emily will go low in the night and not wake in the morning, the excessive absenteeism or being tardy or leaving school early due to blood sugar issues, being closer to the school nurse than your extended family, discrimination from some teachers even with a 504, pump failures, just the day to day relentless diabetic demands. Even through all of this Emily is a happy, friendly, kind hearted young women who’s has a bright future. My hope for her is a future without the demands or the complications of diabetes, she and anyone who has dealt with the demands of type 1 diabetes deserves it…..a permenant diabetic vacation. With the help of the FDA this is certainly a reality!!

  19. Anne says:

    My one in a million is my son Jeff. He was diagnosed at age 12, just 3 years ago. He deals with his diabetes with so much courage, and acceptance, and grace. He has missed important hockey games due to high blood sugars, or lows that send him to the bench to miss a shift. Seeing him turn white, and pale and sweaty, from a low blood sugar is the most frightening things I have ever experienced. He struggles to keep it together at school, misses class time, and has also experienced discrimination from some teachers and school administrators, despite a 504 plan. As a parent it’s hard to accept that your child will never live life without difficulty, will always struggle with their health. I hope for a better way to control his blood sugars, so he can live a little less burdened. I would love for us all to worry a little less! The Artificial Pancreas is needed desperately, right now! Today!

  20. Victoria says:

    I am one in a million and have been for 18 years. I should be worth saving.

  21. My one in a million: my son, currently 5 yrs old daignosed with type 1 just over 4 years ago. Im sure you can all imagine the added stress and difficulty with trying to catch hypos with a 1 yr old who has no way to communicate that to you, or even a 2yr old, or try explaining to a toddler why you constantly poke their fingers, give them shots or change sites, Im still trying to find the words to best explain all this to my 5 year old. Though he does now have a basic understanding of diabetes, and that it wont go away, but he still prays everynight that it will, even at 5 he has dreams and ambitions in life, that include a life free from pain, a life with the ability to eat whenever and whatever he desires, a life of a child, that he doesnt get to fully experience because he checks his blood sugar before, during and after playing, he checks his blood sugar before asking for a snack, he makes sure someone has bolused him for his snack before he leaves the room, these are things that a 5 year old should not have to do, he should be able to just play, or just have his snack… and for me his mother… I should be able to just let him sleep, and not worry if he fell asleep due to a low or if he was just tired… everyone in my house could use one good night of sleep, without the midnight check, or the 3am check perhaps someday right?

  22. Julie Bline says:

    My “one-in-a-million” is Jack. He just turned 2 years old on Sept 3, 2011. 24 days later, on Sept 27th, he was diagnosed with Type 1. It has only been 6 short and long weeks as I write this so I don’t have all of the stories that other might have with a longer diagnosis but I can tell you what my hopes and dreams are for my little guy.

    I hope for a life of freedom for him which would include the following:
    **I want him to be FREE to play whatever sport he wants without worry about “bottoming out” during activity or taking in a certain amount of carbs before the activity to sustain his body throughout.
    **I want him to be FREE to eat a piece of his own birthday cake without counting the carbs.
    **I want him to be FREE to run and play and sleep over at friend’s houses without being different.
    **I want him to be FREE of anger over this disease. No child should feel the anger that this disease causes
    **I want him to be FREE of 3am blood checks
    **I want him to be FREE of painful needles and countless injections
    **I want him to be FREE of worry and stress this disease causes
    **I want him to be FREE of being labeled “different” or having “special needs” (but lets be honest, we all have needs that are special, right?!?)
    **I want him to be FREE to live his life the same way you and I do
    **I want him to be FREE from crying when he sees me walking towards him with his blood test kit or with his insulin needles.

    I don’t know the ins and outs of the FDA and I can’t pretend I do. What I do know is that there are millions of people that are suffering from Type 1 Diabetes and if the FDA can push faster and stronger with approving treatments such as the artifical pancreas, then my little Jack can have a future with more freedoms then he has now. A cure from this disease is what we truly need and I pray every night that the FDA is doing the right things and not holding back.

    • Paula Fairchild says:

      Beautiful message (as is all of these stories.. but some I can totally, personally, relate to certain experiences and issues dealt with, emotions, feelings… like this story.. )

  23. Tanya Moder says:

    My One in a Million is my beautiful 21 year old daughter Brandi who was diagnosed with Type 1 seven years ago. Although most people with diabetes can live relatively “normal” lives with the daily grind of blood checks, insulin shots, and counting every single carb they eat, my daughter is not one of them. My daughter is not only trying to live with diabetes, she is actually dying from it.

    Three years ago Brandi became insulin resistant due to adrenal insufficiency. Now she must take 300 units of insulin a day yet still has blood sugars that are routinely over 600. She spends a week or more in the intensive care unit every two or three months on an IV insulin drip to bring her pull her out of DKA. She suffers from autonomic neurapathies that affect her heart, intestines, bladder, hands and feet. Her veins have been so overused from the frequent emergency room visits and hospital stays that a permanent port had to be placed in her chest.

    Three months ago we were told she needed to have a pancreas transplant to survive…only to be rejected by every hospital we contacted because she is too sick and her autoimmune system too frail.

    My daughter doesn’t have another five or ten years to wait for the FDA to stop procrastinating, she needs help NOW. Please, I beg you…stop dragging your feet and approve the artificial pancreas and anything else that may save my daughter.

  24. Lydia says:

    It is that time of the year again…time to make Christmas wishlists. My one in a million daughter’s list includes a diabetic service dog to help her even out this roller coaster of blood sugar highs and lows that she lives. A child’s Christmas wishlist should not need to include items to ease their disease. A pet should not be counted on to keep one healthy. FDA please do all that you can so that wishlists are full of toys and hobby items, not life saving items.

  25. Nancy says:

    My one in a million is the bravest girl I know: Teresa, diagnosed at age 4 on January 14th 1998. Now 18 and a freshman in college. Each of the past almost 14 years has presented new challenges and new worries. But transition to college has been the hardest. Every morning I wait for her text to make sure she made it through the night. Every day she struggles with a demanding class schedule, dance classes, all the challenges of moving out of her home and into a new environmnet AND managing bloodusgars when EVERYTHING in her life has changed (food, friends, sleep, stress, etc). She has also tried the CGM and decided that combined with the pump, it is too much hardware right now. FDA: do the right thing…move forward quickly on the APP.

  26. Paula Fairchild says:

    Wow.. what touching stories that have been shared thus far… so many of us in this fight together.. .the fight to find a cure, to improve research, improve technology. How do we put into words what we deal with 24/7/365? So much to share.. so many important issues to point out. So many fears, concerns, hopes, dreams…all caused or affected by a life with type 1 diabetes.
    My one in a million is my daughter Emilee. Diagnosed at 7, she is now 14. She plays soccer, softball, golf. She’s known as a social butterfly, liked by all at her school. Such a sweet, tender, compassionate girl. But we are seeing complications of the 7 years of diabetes… some neuropathy, some gastroparesis, terrible hormonal fluctuations causing severe adbominal pain and irregularities. As a mom, I’m supposed to get rid of all the monsters under the bed and in the closet… yet I can’t protect her from the invisible sudden changes that causes extreme highs and lows and ravages her body and organs… This is one monster I’d love to see defeated, but can’t do it alone.. None of us can. That’s why I’m so thankful for JDRF, and all other entities working for a cure.. and why I sign every petition to the FDA that I see… On the whole, I’m thankful it isn’t worse. But I’m also hurting that ANY child has to deal with any of this. My sister, now 34, was diagnosed at age 13. Lost an uncle to type 1 when he was only 51. He’d been a marathon runner, successful businessman… developed a blister.. a simple blister. on his foot.. ended up losing half the foot.. then gum issues led to his teeth all being pulled… then his kidneys started to fail… and after a week in ICU from non healing wound after the amputation, he was discharged home. A week later, I found him dead.. he’d apparently had a low, slipped into unconsciousness, and with his pump still ON, fell into a coma and then death. My daugther wouldn’t sleep for days, and wouldn’t sleep alone for weeks, for fear she too would die in her sleep. The other uncle, also type 1, recently stopped to fuel up his vehicle on his way to work. He was fine one minute, in an ambulance the next from a sudden low and unconsciousness that dropped him to the ground, banging his head on the concrete and gas pump as he fell… My Emilee is my one in a million… but my sis, my uncle, and in memory of my other uncle.. they’re also my one in a millions.. and why I too urge the FDA to press forward, to do what needs to be done.. Years of promises of a cure… it’s time. This generation.. NOW. And if not a cure right now, at least put into the hands and lives of all those suffering with type 1 diabetes the technology to better manage this disease that steals sleep, freedom, and lives.

    • Beth McCrary says:

      Thank you sweet friend for taking the time to put into words what each of us experiences and how we feel about having a loved one living with type 1 diabetes. I just hope that the powers that be are reading and hearing our hearts!

  27. Jennifer Strickland says:

    My one in a million is my sweet Taylor. Diagnosed just over 2 years ago. Reading this and the posts above, just leaves me with tears and goosebumps. The thought of my little girl having kidney failure or a limb amputated makes me feel weak in the knees. The thought of this horrible disease taking her life….well that is just not something I can even think about. After she was diagnosed I spent hours researching to learn about potential cures. It gave me hope that someday she would be free from all the carb counting, finger poking, highs and lows. My ultimate prayer if for a CURE. Until that day comes a huge load would be lifted if the dangerous lows could be eliminated.

  28. Kim Cogsdill Power says:

    My one in a million is my son, Christopher, diagnosed four days before his 7th birthday. He is now 18 and a freshman in college. He has never let this disease slow him down. He is a star athlete in all sports he plays. He now concentrates fully on baseball as a catcher and made the Methodist University varsity team as a freshman. He has been told by his coach that he is better defensively than his senior catcher. We believe he has the skills to go to the next level. Anyone that has ever seen him play says they can’t believe he has diabetes. They say he just looks so good. I tell them that his battle is on the inside and they will never see what he faces daily.

    As a mother, I think about all the long-term affects that his daily battle will bring. When he was first diagnosed, the doctor said the only cure was a pancreas transplant. I asked the doctor if he could have mine, and he said I would have to be dead. My answer was, “So?” I know all mothers feel this way. If only we could somehow take this away from them. When Christopher was about 8, he said, “I bet you would let them cut off your hand if that would get rid of my diabetes.” I told him they could have both my arms and both my legs if that would take it away from him. That made him cry. He just didn’t know that I cried a lot.

    Now that he’s away at college, I worry more than ever. Is he eating the right things? Is he checking his blood sugar enough? How will all those long baseball practices and road trips affect his numbers? What if he has a low in the night and I’m not there to check it? What if…. The thoughts go on and on.

    Please, FDA, please give us this life-changing opportunity. We need it sooner than later.

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