John & Sara Weber

RAISED:

$130

GOAL:

$1,000

We're walking to find a cure for Type 1 Diabetes- for Drew's Dreams!

Dear Friends, Family & Colleagues:

Drew was diagnosed with Type 1 Diabetes five years ago on Dec. 28, at the age of 17 months. It was a Friday, and I can remember the day like it was yesterday. Without a doubt, it was one of the scariest and saddest days of our lives.  We realized that he had diabetes by using his dad, John?s blood sugar tester.  Thankfully and sadly, we knew the symptoms of high blood sugar all too well. Drew?s dad, John has been a Type 1 Diabetic for twelve years.  Looking at him one morning, after wanting his third glass of water, we just knew. The blood sugar tester confirmed our worst fears.  I thank God everyday for the experience and instincts that we had that morning, as I believe that if he would have went to daycare that day, he could have easily slipped into a diabetic coma during his nap.  His blood sugar was 700+ when we got to the ER. 

Having a toddler in diapers with diabetes is extremely challenging. He was wearing an insulin pump on his back before he was two years old.  However, having a strong willed six year old with diabetes is equally as challenging.  As he has gotten older he has realized that he is different. He knows that most kids (or adults, for that matter) don?t have to live with all of the pokes and regimens that he does each day, and some days he is acutely aware of how unfair it is. 

Each day, his blood sugar is tested between 8-12 times.  As his parents, we are constantly concerned about him? while he's awake and while he's asleep.  In January of this year, we had a huge scare that reminded us again (not that we could ever forget) of how serious and scary this disease could be.  Austin woke us up in the middle of the night to tell us that Drew was sick.  We went in his room to find him stiff and unable to move.  He was terrified, crying and couldn?t tell us what had happened.   

This now takes the cake as the scariest day of my life to date.  We rushed him to the ER, where they did an MRI and a CT scan to figure out what had happened.  They thought it was a stroke. Or a tumor.  And he still couldn?t move.  As I type this, I can feel tears just remembering that morning.  Thank goodness, his movement started to come back over the next few hours, and he had full mobility after about 8 hours.  They diagnosed him as having a low blood sugar seizure that resulted in Todd?s Paralysis.  We had another experience VERY similar to this just three weeks later; that has since resulted in us changing doctors, completely redoing his insulin pump regimen and adding a Continuous Glucose Monitor to his care.  Since this has happened, things are much better.  However, it is going to take this mom?s heart a lot longer to recover from that scare.

Sleeping at night is a challenge for any parent of a child with T1 Diabetes.  However, now our greatest fears are associated with sleeping as that is when both seizure incidents happened, and it has rocked us to the core.  So? if you see me and wonder why I look so tired, don?t ask.  Simply refer to this email! J

Despite all of these challenges, Drew thrives!  He is a gregarious learner, sports (Jackrabbits! Boo!) enthusiast and is just as competitive as his dad!  He started kindergarten in August at Mark Twain, and loves every minute.  He plays soccer and basketball with great determination and blends in perfectly with all of the other kids. 

That?s the blessing and the curse of this disease.  From the outside, it is a manageable disease.  But it is not an easy disease.  Until you know and understand the day-to-day struggles (as his teacher, parents, daycare provider and grandparents do), you could easily think that it?s not that big of a deal.  But you?re wrong!  On top of the immediate needs of keeping him alive, you can also keep yourself awake at night, worrying about what is happening to his body on the inside that may result in complications down the road. 

His finger gets poked 8-12 times a day?a task he can do by himself now!  He has his site changed 3 times a week, and a separate needle is inserted a couple times a week for this Continuous Glucose Monitor.  That?s more pokes in one month then I?ve gotten in my entire 33 years.  Think of how you or your child feels when they need to get one flu shot!  On top of this, he?s a growing child, so his insulin needs change rapidly.  What worked one day, may not work at all the next.  And, whenever your relying on technology to do the job that your body is supposed to be doing? there are going to be challenges.  Those days he may get poked 20 times, not to mention that until we get it fixed, he feels like absolute crap!  He?s only 6? and he knows no other way. 

As a parent, we all entrust our kids? lives to others each day.  Daycare providers, teachers, coaches, etc.  As a parent of a child with Type 1 Diabetes, the significance of what you are entrusting others to do can sometimes take your breath away.  What if something goes wrong?  What if he gets too much insulin and slips into a coma or has another seizure?  What if?   

After this past year, we are re-energized to find a cure for this disease that has robbed Drew (and so many others) of being a normal kid.  We are hopeful and optimistic that within Drew?s lifetime, and hopefully within John?s, that there will be a cure for this terrible disease. As a family, we are walking in the Juvenile Diabetes Research Foundation (JDRF) walk on Saturday, Jan. 26 under the team name of ?Drew?s Dreams.? The walk is held at the Sanford Research Center, beginning at 8:00 a.m.  We?d love to have you walk with us, donate or do both!

The money raised WILL help find a cure, which can make Drew's life, and the more than 15,000 other kids' lives who are diagnosed each year normal again.

After putting in Drew?s last Continuous Glucose Monitor site (which is a very long needle) the other night, he was upset.  I said, ?it really sucks having diabetes, doesn?t it??  Drew looked up at me and said, ?yeah, it super sucks.? 

You can donate by going to: http://www2.jdrf.org/goto/drewsdreams.

If you feel more comfortable, please send a check made out to JDRF to our home at 108 W. 21st St., Sioux Falls, SD 57105.  Remember, this donation is tax-deductible! 

Thank you so much for your donation? it truly does mean everything to us! 

 

 

join my team Donate to John & Sara

WALK DETAILS

Date and time

January 25, 2014
Registration: 7:30 AM
Starts: 9:00 AM
Length of walk: 45 min.-no set distance

Location

Sanford Research Center
2301 E 60th St. N
Sioux Falls, SD 57104

MAP

CONTACT

Tammy Beintema

tbeintema@jdrf.org
(605) 312-6438

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