As I read the letter below  from my friend, I sat in deep sorrow and a realization of the fact that I can never know what it must be like to be a parent of a precious child with a life threatening illness. I can not imagine what this family faces ever day and night as they closely monitor the blood levels of their 8 year old daughter every few hours…even throughout the night. How do they hold it together, remain alert and competent at work, take care of all the details of day to day life, continue to volunteer in our community, and give all that they have to their children? This family is AMAZING and though I can never know what it’s really like, I want to do all that I can to help them conquer Diabetes once and for all!

Please take a moment to read the below letter and see what you can do to help.

Letter from Beth White – Mother of Ellie (8 year old with Diabetes)

What a summer – they go by way too fast!  We have been making the most of every moment, playing, traveling and just having fun together.  Now it’s time to focus on school and dance and soccer and piano and violin (?) and all the things that the school year brings.  I wanted to give you an update on how our team fundraising is coming, to remind you why we are doing this, and ask you to consider joining our team if you have not yet done so.

JDRF stands for the Juvenile Diabetes Research Foundation. Started 40 years ago by two moms at their kitchen tables, the JDRF has grown to be the worldwide leader in funding research to cure Type 1/juvenile diabetes.  The JDRF’s mission has always been to find a cure for Type 1 diabetes and its complications. The organization has also committed itself to developing new and better treatments to improve the lives of people like Ellie who have Type 1 diabetes and allow them to live as full and healthy a life as possible until the cure is found.

Due to an unfortunate roll of the genetic dice, Ellie’s pancreas no longer produces insulin. Insulin is the hormone which converts food (carbohydrates) into energy.  Ellie now has to receive all of her insulin through shots or her insulin pump. Although she gets the insulin she needs, this method is not nearly as efficient as the human body and Ellie’s blood sugars run much higher and lower than someone without diabetes. This can lead to serious and life threatening complications including seizure, coma, kidney failure, blindness, heart disease, stroke, amputation and nerve and blood vessel damage. Tough stuff to read when talking about anyone especially a 3 year-old — or now 8 year-old. Unfortunately, diabetes is not something Ellie can grow out of.  She will need to give herself insulin injections many times a day for the rest of her life.  UNLESS WE FIND A CURE!  That is where the JDRF and your donations come into the picture.

I am dedicated to finding a cure.  I joined the Board of Directors for the JDRF over five years ago, right after Ellie was diagnosed with type 1 diabetes.  I am in awe of the enthusiasm and devotion I saw in the staff and volunteers from around the world.  When I joined JDRF there were only a handful of human clinical trials- now we have OVER 40.  They are committed to finding a cure – they are using their donations to fund important research projects – that get us closer to a cure.

Ellie has experienced extremely low blood sugars which caused her personality to completely change. Our reasonable, rational daughter felt awful. She did not want to drink her juice, cried hard about having to eat a cracker and was upset at me for making her do both. Holding her and watching her as her blood sugar started to rise was agonizing. People with Type 1 have to live with this constant changing of their blood sugars every day. It takes a toll- emotionally and physically.

One of the most challenging elements of diabetes is its chronic nature- it never goes away and never gets better or easier.  Before Ellie was diagnosed we assumed that food and exercise were really the only things that affected blood sugar—but we discovered it is a host of other things as well including stress, growth, sickness, excitement, altitude, etc… Since we can’t control all of the elements, Ellie has to test her blood sugar 8-12 times per day. That means over the last five years Ellie has had over 22,000 needles pricked into her fingers during the day and in the middle of the night. 22,000!

I wish I could explain how well Ellie handles having diabetes. She never feels sorry for herself and takes the extra work required to live life in stride. We try to learn from her. She does not let the disease control her and accepts the care and attention needed and just carries on with a smile. She has her moments when she articulates so clearly how much she wishes she didn’t have the disease that it is heartbreaking.  She worries about how it affects Ryan and her friends and family who worry about her.

Managing Ellie’s disease is a challenging balance. As a parent you work hard checking blood sugars during the day and throughout the night to keep your child healthy and living life as other kids their age. But you also want people to understand how different simply living life is every day.  How do you get across in a few minutes the stress and love that comes when looking at the camp forms that asks if this child has any medical or special needs we need to know about, the fear that comes with getting a new teacher every year wondering if they will be willing to do the extra work and not treat your child as a sick kid, the need to know the carb count of everything that goes into your kid’s mouth every single day, the balance of letting your kid be a kid and keeping them healthy, the unknown of play dates and sleepovers, the anxiety of letting your child start to take over their own care?

That is why we ask for your help – to create a better life for Ellie, our family and the millions of people living with diabetes. Since 1970 the JDRF has funded more than $1.4 billion in research. In 2009 alone, JDRF funded nearly $101 million, more than $42 million of which represented new scientific projects. We are able to do this research because of YOU.  This research is our hope and why we walk every September.

So far, Ellie’s hard work and your generosity has helped us raise over $20,000!  That came from MANY contributions – many fives, tens and twenties, and piggy banks of pennies, and over several years.  We have so many caring friends!  We’re asking for your support either through making a donation or by joining our fundraising team. Last year we had over 160 walkers here in Denver as well as virtual walkers from around the country who raised money and walked with us in spirit. Without them we would not have met our goal!  The walk is a fun day of supporting Ellie, seeing friends, face painting, reptiles and Stormtroopers, fun t-shirts and riding every ride we can at Elitch Gardens when the walk is done. We hope you will consider joining us for the walk in Denver or as part of our team from wherever you live. Directions on how to sign up as a walker are attached to this email along with some shamelessly cute pictures!

With less than 2 weeks to go until “Ellie’s Quest for a Cure” at the JDRF Walk to Cure Diabetes we are gearing up for a great walk and still plugging away toward making our goal of raising $5,000 toward diabetes research.  We are currently 40% of the way there having raised over $2,000.00 – amazing!  Ellie is incredibly excited and loves to see how her walk fundraising “thermometer” is rising at JDRF.org!  She can’t wait for the big day to see all of her friends and find out how successful this year’s fundraising has been.

I can’t say enough times how much we appreciate all that you do to support Ellie and our family.  THANK YOU!!

Mike, Beth, Ellie and Ryan

What YOU can do to HELP:

1. Join the Walk for Diabetes:
This fun 2 mile walk will take place on Sunday, September 12, 2010 around and through Elitch Gardens, Denver, CO at 9am.  Entertainment will begin at 7:30am.  We will meet under that Ellie’s Quest for a Cure banner at 8am for our team photo – don’t be late or you may miss the photo!  Please let us know (Beth.White@UCDenver.edu OR 303.642.1608, by August 20th) your t-shirt size so we can provide you with a new Ellie’s Quest for a Cure shirt and cake.  Please feel free to share this letter and invite your friends.  It’s a party after all!

2. Donate securely online or by check .  All money given to JDRF is tax deductible.  JDRF has some great prizes – if you donate $100 or more you will receive a new JDRF walk shirt, and for $150 you will receive a FREE Elitch ticket!

To securely donate with a credit card online:
1.  Go directly to Ellie’s walk page at

http://walk.jdrf.org/walker.cfm?id=87718074 OR go to the JDRF website at www.jdrf.org. Look for the green sneaker in the middle/top of the page and click on the “Donate” link near the sneaker.  In the “Donate to a Walker” section, enter Ellie’s name:  Ellie White of Colorado and then click on the “Find Walker” button.
2.  Click on Ellie’s name and then “Donate to This Walker”.  It will have a short page for you to complete with your information.
3.  A receipt will be generated automatically and emailed to you for tax purposes.
To donate with a check:
1.  Please make check payable to the “Juvenile Diabetes Research Foundation”.
2.  Send it to Ellie White, 11760 Lillis Drive, Golden, Colorado  80403 and Ellie will get to deliver the check to our regional JDRF office.

To learn more about the Juvenile Diabetes Research Foundation, all that JDRF does to help find a cure for diabetes and its complications, please visit www.jdrf.org.

Tags: Family, Health