Emily's speech to Nalco Chemical in Naperville on September, 2010.

 

Good morning, I’m Emily Laughead. I am 12 years old. I have had Type 1 Diabetes since I was 4. I don’t remember what it was like not to have Diabetes, but I do know my life would be a lot less stressful if I didn’t.

 

In 2003, my mom brought me to the doctor because I was going to the bathroom a lot. I took a test and the doctor came into the room with the results. She looked real sad. She said I had Diabetes. My mom didn’t believe her. The doctor said 1 in 500 children get Type 1 diabetes and 90% of those children do not have a family history. Type 1 Diabetes is not something you can prevent, it just happens. I’m the only one in my family that has it.

 

Type 1 Diabetes is an autoimmune disease in which the cells programmed to fight infections get confused and attack the insulin cells in my pancreas. The pancreas gets overwhelmed and it stops working. I need insulin daily or I’ll die.

 

A non diabetic’s blood sugar range should be between 80-120. Mine can be any where from 30 to over 600, if I don’t take my insulin properly, which can sometimes be tricky. Even if I’m doing everything right, there are other factors that can effect blood sugar, for example: stress, hormones, illness, malfunctioning pump and exercise, to name just a few.

 

Low blood sugar could lead to unconsciousness and death, it is an emergency situation. High blood sugar over a long period of time can lead to complications of blindness, foot amputation, kidney failure, stroke or heart attack.

 

To manage my diabetes I have to test my blood sugar 8 to 10 times a day by doing finger sticks. I’ve had diabetes for over seven years. My fingers have been pierced by lancets over 23,000 times!!

 

I am also on an insulin pump. Although this is the best way to manage Diabetes, the pump only does what you tell it to do. It is not automatic. It costs over $6,000 for the pump alone and needs to be replaced every 4 years.
The pump is connected to my body by a thin tube which on the one end is set under my skin, on my stomach or rear, to infuse insulin. It is called an infusion set. It needs to be changed every 2 to 3 days and moved on my body to prevent infection. Last year I was starting to get scar tissue build up from so many infusion sets. I had to go back to shots so my body could heal.

 

Because of my Diabetes, my family’s out of pocket medical expenses, per year, are over $30,000, to keep me alive and healthy. We need a cure.

 

The one thing I hate the most about Diabetes is that it took away my freedom to just be a kid!

 

In 2005 my family founded a non profit organization called Emily’s Hope. We have a website at www.EmilysHope.org. Our goal is to educate and raise awareness for Type 1 Diabetes.

 

My family holds fundraisers to raise awareness and money for a cure.
- This year we had our 5th Annual Emily’s Hope Garage Sale.
- We had a booth at the Geneva’s Swedish Days in June, Batavia’s Windmill City Fest in July and this weekend we’ll participate at North Aurora Days.
- We have participated in three parades this year in our “Emily’s Hope Moblie”. This year Scooby Doo and Shaggy made guest star appearances.
- We have annually participated in the Ron Santo walk since 2003.

 

To date Emily’s Hope has raised over $35,000 to cure diabetes.

 

One day very soon I’d like to say, “Hi I’m Emily and I had diabetes but now I’m cured!”

 

Together we can make a difference!

 

Thank you.

 

 

Emily's speech to Bill Foster on February 2010.

 

Hi, I’m Emily Laughead. I’m 11 years old and I have Type 1 Diabetes.

 

First, I would like to thank Mr. Foster for taking time out of his busy schedule to listen to all of us.

I have had Type 1 Diabetes since I was 4. In 2003 my mom brought me to the doctor because something was wrong. After a few tests the doctor told my Mom that I had Type 1 Diabetes. My mom didn’t believe the doctor. We have NO family history of diabetes. Type 1 Diabetes is not something you can prevent, it just happens. Having Type 1 Diabetes has effected and changed all aspects of my life. I would not wish this disease on my worst enemy.

 

I don’t like diabetes because I hate having to test my blood sugar at least 8 to 10 times a day. My fingers are full of tiny holes!! I really notice the tiny holes when I take a bath or go swimming. I test myself so many times a day because we know that the longer my blood sugar numbers are to high or to low time is being taken off of my life. The life expectancy for a Type 1 Diabetic is 51 years old. I want to live to be a lot older than 51 but the odds are stacked against me. If I don’t take care of myself now, a lot of bad things can happen to me later, like, I could go blind. I could lose a foot. I can have my kidneys stop working. I can have a stroke or die before I’m 30 years old. We know of many people that have died before they were 30 because of Type 1 Diabetes

.

I hate infusion sets for my insulin pump. They hurt! My Mom usually does this at night so I don’t have to see the huge needle needed to insert the infusion set into my tummy. I have to get a new infusion set every 2-3 days because the skin stops absorbing the insulin at my infusion set site. My tummy is full of tiny scars! Because of this I have taken a pump holiday since school started this year. Now I give myself 5-10 shots a day. The scars on my tummy are almost healed but now look at my arms. When my family looks at them they feel like throwing up! I’m going back on my pump next month so the other parts of my body can heal from all the insulin shots.

 

Another part of diabetes I hate is high blood sugar. I get very emotional and I can’t focus on what I’m doing. This really effects me at school. Before I take a test I must see what my blood sugar number is. If it’s over 275 I can’t take the test. I am a straight A student but when my sugars are to high I turn into a straight C student. My goal is to be in the top 15 in my class but with diabetes it will be very hard to accomplish this. Also everyday at school before lunch I test myself and see what my blood sugar number is. I call my dad and we decide what amount of insulin I should give myself. I’m glad my dad is able to help me everyday or I don’t think I would be able to go to school. I usually have to go to the nurses office or take myself out of class at least 3 times a day. I have missed so much school since I was diagnosed with Type 1 Diabetes. I gave a speech at school last year and I figured out that I had been to the nurses office over 1,500 times.

 

I also hate low blood sugar. When this happens I need to get some sugar into my body as soon as possible or I might go into a coma. I get dizzy and can’t focus, plus I feel sick. One day after a school fun fair my Dad was cooking dinner when I said “Daddy, I feel dizzy”. Right away we suspended my insulin pump and had a juice box to bring my blood sugar up. My Dad tested me while all this was happening and my blood sugar number was 38! It should be around 100. I was very close to being unconscious and going to the hospital. That was one of the scariest times for both me and my dad. Another example of how quickly diabetes and low blood sugar can effect my life was at my last band concert. We played at West Aurora with 3 other middle schools in district 129. Before the concert I had a normal dinner that my parents thought would get me through the concert, but it didn’t. In between the 5th and 6th song my blood sugars started to drop quiclky and I threw up on stage and even on the person in front of me. I felt so bad and emberassed but this is how life is for me living with Type 1 Diabetes. Some people at school who don’t know me made fun of me but that is the least of my problems

.

The one thing I hate the most about diabetes is that it took away my freedom to
just be a kid! I have a lot of responsibilities to stay healthy and alive for an 11 year old! I don’t remember what it’s like to live without diabetes. Because I live with Type 1 Diabetes I can never be spontaneous. For example, if I want to go to a friend’s house, I have to bring my purse full of my diabetes supplies. My parents can’t just drop me off. They always go into the house and talk with my friends parents to make sure they are aware of what Emily needs to do and what can happen if things should go bad. My dad says he can see the fear in my friends parents faces. There have been a few times where my friends parents have had to take emergency steps because of my diabetes. I know that I’m not asked over to my friends houses as much as I could because of my diabetes.


I also notice how my diabetes has effected my whole family. My parents have not had a full nights sleep since I was diagnosed with Type 1 Diabetes. My mom still tests me in the middle of the night to try and keep my blood sugar numbers as normal as possible. My parents say they have to sleep with one eye and one ear open every night. Many times in the middle of the night I wake up and feel low so I wake my parents up so they can get me some food or a juice box to bring my blood sugar s up. If my blood sugars are high I wake up and have to go to the bathroom. My parents hear this and wake up and test me so I can give myself more insulin. My dad says that the lack of sleep is destroying his body and he hopes he makes it to his 50th birthday. I hope he lives longer than that but I can tell that his body is hurting. This disease is a never ending battle that is slowly killing my family.

 

My parents told me that you voted yes to the health care bill. Thanks. My dad has been self employed for 17 years and pays for our family’s health insurance.. Our health insurance just went up another 26% this month with no increase in benefits. My dad has paid over $125,000 in medical costs since 2003 when I was diagnosed with Type 1 Diabetes. My dad is doing his best but we can’t get ahead. We have not gone on a vacation without someone helping us out with a free house to stay at or an in-law paying for the vacation because we don’t have the extra money. My dad hasn’t bought himself any new clothes in over 7 years. He says, buy some new clothes or keep me alive.

 

In 2005 we created Emily’s Hope, a Type 1 Diabetes Education and Awareness organization and my web site www.EmilysHope .org. This past year I gave a speech at the North Aurora Lions Club award ceremony and was awarded the 2008 North Auroran of the Year. We walked in the Batavia Loyalty Day parade for the 3rd year. Me and my dad set-up a Kids Walk to Cure Diabetes at my school. We held our 4th Annual Emily’s Hope Garage Sale Fundraiser. We had a booth at Swedish Day’s, Windmill City Fest and North Aurora Days. I gave a speech a GE and was their child ambassador for the Ron Santo Walk to Cure Diabetes. We walked for our 7th year in the Ron Santo Walk to Cure Diabetes. As you can see we are doing our part to try and find a cure for diabetes but we can’t do it all on our own. We need your help, so when legislation comes across your desk or the House floor please Promise to Remember me, Emily Laughead, and vote yes.

 

Thank you.

 

April 30, 2008 - BLOG Entry:

Hi,  I am going to participate in this years' Loyalty Day Parade on Sunday May 4th with my family and friends.  We hope you could help by providing a donation to sponsor us! Every dollar really makes a difference to help find a cure!

 

Please make your sponsorship/donation check written out to: Juvenile Diabetes Research Foundation.

Mail you sponsorship/donation check to:

Juvenile Diabetes Research Foundation, IL Chapter

500 N. Dearborn St. Ste. 305

Chicago, IL 60610

Please enclose a note with your check: This donation is for “Emily’s Hope”, Lisle, IL Walk 2008

 

 

As always, Your Donation is TAX DEDUCTIBLE (it also makes me smile). Your canceled check is your receipt.

 

February 12, 2008 - BLOG Entry:

 

My TOP TEN reasons I want a cure! by Emily Laughead (Italicized text is Mom’s commentary)

 

1)  I JUST WANT TO BE A KID!

2)  I need to test myself ALL the time! My fingers hurt! (8-10 times a day to check blood sugar so we know how much insulin to administer through her insulin pump.)

3)  I have to have infusion sets for my pump and they are VERY painful! (Infusion sets are where the pump is connected to her body. A small tube is inserted 13mm deep into Emily’s body. Sets are relocated every 2-3 days on Emily’s body because insulin absorption decreases and scar tissue may form. The sites take weeks to heal.)

4)  I still need shots sometimes and they hurt! (Pump failure needs emergency insulin shots.)

5)  Having a pump connected to my body. (24/7, unless bathing or swimming)

6)  Bringing my safety backpack where ever I go, it’s really annoying. (Back pack contains: test kit, insulin and supplies, juice, granola bar, cell phone.)

7)  I hate when my blood sugar is too high or too low. I either want to vomit or I get really bad headaches. I feel crummy. (When a person has type 1 diabetes this happens frequently)

8)  I don’t want to lose my feet. I have to wear shoes all the time even when I swim! (People with diabetes circulation is not good, a small cut on the foot can lead to a serious infection and loss of the foot).

9)  I don’t want to go blind, have kidney failure, a stroke or heart attack. (Very common complications of poorly managed diabetes.)

10)  Diabetes care costs A LOT of money! (The money we spend yearly on Emily’s care, we could buy a new car every year. It is a very costly disease.)

 

 

September 20, 2007 - BLOG Entry:

 

Hi, my name is Emily Laughead. I am 9 years old. I have had Type 1 Juvenile Diabetes since I was 4. We have no family history of Juvenile Diabetes except me. Juvenile Diabetes is when your pancreas stops working and you need insulin injections to stay alive.

            On Sunday October 14, 2007 in Lisle, IL,  I am going to participate in the Ron Santo RWalk for a Cure for Juvenile DiabetesS with my family and friends.  My Mom and Dad have created a team called, REmilyUs HopeS. Please send a donation to sponsor us! Every dollar counts towards a cure!

 

Please make your sponsorship/donation check written out to: Juvenile Diabetes Research Foundation.

Mail you sponsorship/donation check to:

Juvenile Diabetes Research Foundation, IL Chapter

500 N. Dearborn St. Ste. 305

Chicago, IL 60610

Please enclose a note with your check: This donation is for REmilyUs HopeS, Lisle, IL Walk 2007

 

Your Donation is TAX DEDUCTIBLE. Your canceled check is your receipt. The 2006 Ron Santo Chicagoland Type 1 Juvenile Diabetes RWalk for a CureS raised $5.6 million dollars for research.

Wow, imagine being part of that! LetUs find a cure!

 

            I DID NOT get Juvenile Diabetes from eating junk food and not exercising! Nobody knows why children get Juvenile Diabetes, doctors have said it comes from many sources: my genes, the deteriorating environment and certain viruses trigger the disease. Juvenile Diabetes is an autoimmune disease. The cells in my body that fight bad germs got confused and attacked the insulin producing cell in my pancreas instead of the germs. My pancreas shut down and stopped producing insulin.  Insulin is needed to take the food I eat and turn it into energy. If I donUt get insulin, the sugar from the foods I eat starts to build up in my blood and that is dangerous to my health.

             I wish I didnUt have Juvenile Diabetes. When I want to eat something I have to stop what IUm doing and do a finger prick to test my blood sugar. I tell my mom the blood sugar reading and then she can give me the proper amount of insulin depending on what I eat. I have to do finger pricks 8 to 10 times a day and my mom has to test me in the middle of the night to make sure my blood sugar is at a normal range. A non-diabetic personUs blood sugar range is between 80-120, mine could be much higher or lower because my pancreas is not working. My fingers hurt and IUm tired of testing myself. Before bed my Mom or Dad puts cream on my hands and feet so my fingers donUt hurt so much and my feet stay healthy and I donUt get sores. People with Juvenile Diabetes can lose a foot if they donUt take care of them.

            I use an insulin pump to give me my insulin. See picture. On my body is an infusion set. Under the button is a thin, soft tube that goes 6mm deep into my body to deliver insulin. The pump is not automatic. My mom and I still have to program the pump the amount of insulin I should get based on my finger prick readings. I have to get a new infusion set in a new location on my body every 2-3 days because my body stops absorbing the insulin in that area and scar tissue can form.  I get the infusion sets in my tummy or behind. Infusion sets hurt. I donUt want a pump connected to me all the time.

            I want to be able to eat what I want when I want. I want to feel good all the time. I donUt want to go blind, or lose my legs! I will have Juvenile Diabetes my whole life unless a cure is found! When my blood sugar is high: I canUt sit still, I act silly or get irrational and cry. Sometimes my tummy hurts and I throw up. When my blood sugar is low: I feel dizzy, I canUt concentrate, I get bad headaches and IUm tired. If it goes too low I could go into a coma and not wake up! Juvenile Diabetes is awful and I hate it!

 

Together we can find a cure!

 

Thank you!

Emily, Jim, Amy and James Laughead