Children's testimony before
Congress about their Diabetes

Testimony by

Jim Straus

for Zephyr Straus, Age 2

Emerald Hills, CA

Senate Labor/HHS/Education Subcommittee

Hearing on Juvenile Diabetes

June 22, 1999

My name is Jim Straus and this is my 2 year-old daughter, Zephyr. I have had to live with diabetes since I was ten years old. It is difficult, but it is nothing compared to living with the knowledge that I have passed diabetes on to my daughter.

Zephyr was 15 months old when I realized that she was demanding more and more fluids, saturating diapers and becoming increasingly listless. Finally her symptoms hammered through my denial and I squeezed some urine out of her diaper onto a test strip. I was in a state of shock as I watched the strip turn brown, indicating a very high level of sugar and ketones in her urine. I grabbed my own blood glucose test kit, pricked Zephyr's heel and waited for the longest 30 seconds of my life. Can you imagine how I felt when I realized her blood sugar was too high for my meter to read? That first blood test took so much courage.

Now we poke her 8 to 10 times per day and she is one of the youngest people in the world to use an insulin pump. She actually chooses which finger we are going to use. Maybe this seems like a blessing, but part of me wants her to keep fighting it. Passive acceptance of diabetes and insulin therapy will not lead to a cure.

I don't ever want Zephyr to have to set her alarm and get up every two hours to check her child's blood sugar. I don't want her to lie awake all night between the alarms fearing that she's given her child too much insulin, too little food or too much exercise during the previous day, which could lead to a coma or even death. I don't want Zephyr to have to wake her sleeping child in the early hours of the morning and force her child to eat because her fears were correct.

With your support and an increased focus on curing diabetes at the National Institutes of Health, we can cure diabetes for me and Zephyr and 16 million other Americans.

Testimony by

Stockton Morris

Age 9

Haverford, PA

Senate Labor/HHS/Education Subcommittee

Hearing on Juvenile Diabetes

June 22, 1999

My name is Stockton Morris from Haverford, Pennsylvania. At twenty months I was diagnosed with Diabetes. What a shock to my parents, even though my mom is a nurse. I am nine years old and in the 3rd grade at Coopertown School in Bryn Mawr, PA. I have had this dumb disease for 8 years now. I can never remember not having diabetes.

I stick myself eight to ten times a day. My last stick of the day is at 1:00 am. I am asleep and Dad does it, the others I do myself. My fingers get so sore that I put medicine on them before I go to bed. Even though I check my blood sugars a lot, I have had seizures. We really need a cure! I don't want to ever have seizures again!

I stick myself 3 to 4 times at school. It eats up time and I miss schoolwork. Everyone thinks my insulin pump is a beeper. It comes in really handy when my blood sugars are high. I don't need 3-5 shots a day because I have a pump.

Sometimes I'll miss school due to high blood sugars (200-500). I just hurt or feel too tired. My vision gets blurry, I cannot concentrate and my schoolwork does not get done.

On school trips, I just can't jump on the bus. I have to take my blood sugar machine, strips, and food.

Because I also have celiac disease and I cannot eat wheat, sometimes I feel like there is nothing I can eat.

When I play tennis sometimes I go very low because of the running around. I get dizzy, go limp and cannot get up. They tell me this will have bad effects on my body down the road.

My first overnight scouting trip was great but at 2:00 in the morning I had a bad low. My mother said "38." That is very low!

It will be awesome to find a cure. I would love not having to do blood sugar tests. Low blood sugars are not good for my brain. Any money that can be given for research will make the cure come sooner. I really don't want to have complications with my eyes, heart or kidneys. When a cure comes, I want to thank JDF researchers, scientists and doctors. A big thank you for your "Promise to Remember Me" and all the children with diabetes. Thank you.

Testimony by

LaNisha Patterson

Age 10

Germantown, WI

Senate Labor/HHS/Education Subcommittee

Hearing on Juvenile Diabetes

June 22, 1999

My name is LaNisha Patterson and I am 10 years old. I've had diabetes for almost six years.

Juvenile diabetes is a deadly disease. People can get blind and have other problems from juvenile diabetes. I always hoped that diabetes would go away like a cold but it doesn't.

Sometimes kids tease me and call me diabetes girl but I don't show my anger I just don't say anything.

I used to cry when I got fingerpokes and shots. My mom and dad used to cry and we would all pray together.

Sometimes I am hungry but I have to wait to eat because my blood sugar is high. Sometimes I am not hungry but I have to eat because it is time.

I have had convulsions because my blood sugar level went low while I was sleeping. It is very scary. We should be able to sleep through the night without being afraid.

I hate diabetes but I don't get mad because I have it. Sometimes having diabetes brings me to emotional problems but I just go pray with my mom and dad when this happens.

I really, really hope that there will be a cure. If there is not a cure I will find a cure. I want to be a medical researcher. I want to make sure that no other child has to go through the same pain that I go through everyday.

The last thing I would like to say is that the one thing that could keep me from fulfilling my dreams and goals is if diabetes ends my life before I achieve them. So, please promise to remember me and all the children suffering from diabetes and help find a cure for me and others. Thank you and may God keep you and bless you, good bye.

Testimony by

Mollie Singer

Age 10

Las Vegas, NV

Senate Labor/HHS/Education Subcommittee

Hearing on Juvenile Diabetes

June 22, 1999

Hi, my name is Mollie Singer. I am ten years old and I have had diabetes since 1993. In the past five and a half years I have taken 8,395 shots of insulin and I have poked my fingers 20,987 times. Everything I do is planned around my diabetes--eating, sleeping, playing and even homework. If things are not planned exactly, my blood sugar levels can go out of control.

I've been embarrassed in school because I couldn't read when my eyes were blurry because my blood sugar was high and I've been told that "diabetic kids are a hassle." A year after I got diabetes, I had open-heart surgery and I had a real bad time. When I was in the hospital no one knew how to handle a child with diabetes and I got the wrong amount of insulin and the wrong food.

My twin sister Jackie is my best friend and my Guardian Angel. When she was seven, she saved my life by getting help in the middle of the night, when my blood sugar went too low. Jackie does not have diabetes and because I know how hard it is, I hope that she never ever gets it.

Finding the cure for diabetes is all I think about every hour of every day. I try to be brave but sometimes, I get very sad and cry myself to sleep. I dream of what it will be like when I take my last shot of insulin and no longer have to poke my fingers. At night Jackie and I pray for everyone who is sick and we ask God to help the doctors find the cure for diabetes and other terrible diseases. We also pray for important people like you and I hope that after hearing about my life that you will promise to remember me by giving researchers the money needed to cure diabetes.

Thank you.

Testimony by

Will Smith

Age 13

New York, NY

Senate Labor/HHS/Education Subcommittee

Hearing on Juvenile Diabetes

June 22, 1999

Hello. I am Will Smith, a seventh grader at The Collegiate School in New York City. I was diagnosed with juvenile diabetes when I was seven years old; I'm now thirteen.

Sports have always been a big part of my life. I love to play soccer, basketball, and particularly baseball, where I still dream of a professional career. But because of this incurable disease, I have had to worry about my future in athletics. If I couldn't play because of the many possible complications of diabetes--from poor hand-eye coordination to blindness or amputation--I would be crushed. This has been one of my biggest concerns since I was diagnosed.

I am also embarrassed about having to test my blood sugar and sometimes take an insulin shot around my baseball team. Some of my teammates seem uncomfortable at the sight of all the needles and test equipment, and a few have asked why I need to do that in front of them.

It's also painful not to have the freedom of eating whatever I want. While other kids can eat pizza or cheeseburgers whenever they're hungry, I have to consider how those might push up my blood-sugar readings too high. At a minimum, I have to take extra insulin for some foods; others such as cake or candy are usually out of the question. In the past year my doctor has warned me that my blood sugars have been running too high as it is.

I try very hard to manage my diabetes; and I know that we are close to a cure. I can only dream of the day that I can eat what I want and not have to worry about what my blood-sugar number is, and not worry about what it will do to my eyesight or coordination. Though I can only dream about that day, you can help make it happen. Thank you.

Testimony by

Alan Silvestri


Carmel, California

Senate Labor/HHS/Education Subcommittee

Hearing on Juvenile Diabetes

June 22, 1999

As the chair "Dad" of the 1999 Children's Congress, I would like to begin by thanking the ladies and gentlemen before me for the opportunity to bring our story to the people of our country.

Like most parents, I want to do what's best for my kids so they can live, thrive, and look forward to the realization of their most precious dreams in their most precious futures.

Not too long ago, after writing the score for Forrest Gump, my wife and I found ourselves being invited to lots of places with lots of people we didn't know. Once, while introductions were going around, the small talk turned to that great icebreaker question" What do you do for a living?" "I'm a film composer." "I'm a teacher." "I'm a homemaker."And so it went. When it was my wife's turn she calmly replied "I'm a pancreas."

As the parent of an infant with diabetes, one must literally take over the tasks of one of the body's most complicated and miraculous organs.

Sandra was very clear about the job description.

6:30am Joe's blood test

7:00am Joe's shot

7:30am breakfast, carefully weighed to balance his insulin

10:00am blood test

10:30am snack - adjusted for blood sugar and insulin

Noon blood test - if his blood sugar is high then an insulin shot

12:30pm lunch, adjusted for blood sugar and insulin

3:00pm blood test

3:15pm snack, adjusted for blood sugar and insulin

5:00pm blood test

5:30pm dinner and insulin shot

8:00pm blood test

8:30pm snack

9:00pm Bed time

10:30pm Blood test and evening shot

2:00am Blood test

6:00am Wake up and start all over again.

In Sandra's case, her first day on the job happened to be when she was 7 months pregnant with our third child.

This addresses the living and thriving part of parenting but what about the third part, the part that concerns the future.

As parents, we look down the road for our children, trying to safely guide them as they walk into their future. The scientific community and those who have lived with diabetes have reported back to us from down that road and they tell of a future no parent wants for his child.

We know that the cure we are finally so close to is the only thing that will give our children the future every child deserves.

We know that we desperately need your help to achieve this.

One of the great cinematic moments was that moment when Ebenezer Scrooge awakened from a nightmare and realized that it was not too late to change the future for a small child. Today we are asking the American people to awaken to these bright, beautiful faces, filled with hope, and see that, for my son Joe and all these kids, the moment to change their future is now.

Testimony by

Tony Bennett

Senate Labor/HHS/Education Subcommittee

June 22, 1999

Hearing on Juvenile Diabetes

Good Morning Mr. Chairman and Distinguished Members:


I don't consider myself an expert on diabetes, but I have had enough first-hand experience with those who have suffered its consequences to know what havoc it can wreak on the human body. In the course of my career, I was fortunate to be close friends with two wonderful performers--Ella Fitzgerald and the coronet player Bobby Hackett. Through the years that I knew them, I would witness how this terrible disease took their toll on them, as they suffered from the complications caused by diabetes.

Millions of Americans--almost 16 million to be exact--are living with diabetes. Their future is uncertain and although insulin is a treatment it is not a cure and it does not prevent the onset of complications from the disease that can be just as debilitating as the disease itself.

It has been a very positive experience, through my involvement with the Juvenile Diabetes Foundation, to see how much can be accomplished when support is made available for research. In know that the future of all these children here today and across our country can be much more promising if we can increase our efforts to find a cure. I offer my personal appreciation to the members of this Subcommittee who have made funding for medical research a top priority. None of us must forget that we do not have a cure yet--and we owe it to our children to ensure that every possible scientific opportunity in diabetes research is funded so that there will be no delay in bringing home the cure.

Testimony by

Mary Tyler Moore

International Chairman

Juvenile Diabetes Foundation

New York City, NY

Senate Labor/HHS/Education Subcommittee

Hearing on Juvenile Diabetes

June 22, 1999

As International Chairman of the Juvenile Diabetes Foundation and on behalf of the hundreds of thousands of children with diabetes and the families that cherish them and guard their futures, I thank you for giving me and this first JDF Children's Congress the chance to appear before you today.


Diabetes is one of the most common chronic diseases of childhood, and as all of the children and families here today know, first hand, it changes everything about a child's and a family's everyday life. And to add to the day-in, day-out hassles of living with diabetes--the balancing of diet, exercise, and insulin, the shots, the terrible episodes of low sugar, the weird feelings of high sugars--is the knowledge that even if you do all you can to be as normal as possible, you're not, you're different, and you face the uncertainty of an adulthood visited upon by early blindness, kidney failure, amputation, heart attack or stroke. You know insulin is not a cure, as will the 30,000 children who will be diagnosed this year with diabetes.

What gives us all hope, at JDF, is the promise of research, and the commitment of this Committee, and you, Mr. Chairman and Senator Harkin, to make doubling the NIH budget over the next five years a top national priority. Further, we appreciate last year's 15% "down-payment" on that doubling and have confidence you are up to the challenge to take the next step ­ another $2 billion increase for NIH this year. Of course within that overall increase at NIH we urge you to, once again, identify diabetes research as an area of great opportunity and need, and of top priority at every NIH institute.

Mr. Chairman, the justification for increases in diabetes research has been provided by the recently released report of the congressionally mandated Diabetes Research Working Group. The DRWG report, drafted by a national panel of diabetes research experts, puts forward an accelerated and expanded diabetes research program at NIH. The panel recommends an FY 2000 appropriation of $827 million for diabetes research.

The DRWG report identifies numerous major opportunities not being pursued because of lack of funds and focus. They include potential high impact initiatives in: the genetics of diabetes; the biology of the beta cell; the treatment of diabetes related eye-disease, kidney disease, nerve disease, and heart disease; and the development of a vaccine for prevention of Type 1 diabetes. All of these initiatives were identified as high priorities, by DRWG and are of particular importance to children with Type 1 diabetes.

I want you to know that you are not the only one we are challenging to double research budgets, or focus expenditures on better responding to public needs. We have also challenged ourselves. At JDF, in 1998, we gave about $30 million to research; in 1999, $55 million; in 2000, we will give more than $75 million; and by 2002 we project giving more than $120 million to research--that is a doubling every three years.

Mr. Chairman, you and this committee can take credit, through your past commitments to NIH, to having helped bring us to the threshold of a cure. And we at JDF have been proud to be your partners in this absolutely crucial endeavor. We know that this is a particularly difficult year for appropriations. But we cannot lose momentum. Not now that we are so close. So I ask you, Mr. Chairman, members of the committee, look around this room once more, listen to the voices of the children who will tell you their stories today, and when you retire to your deliberations, promise to remember them, promise to remember the more than 16 million people, who like me, have diabetes, and promise to work with NIH to ensure that funding is provided so that all identified research opportunities in the DRWG report are explored. At a minimum, we need to be able to tell the children and their loved ones that we are investing the dollars necessary to find a cure. Thank you.