I get the privilege of introducing you to a guest blogger today. My daughter Allie Sparks has written the following as a speech to give to her 5th grade GT class at school. I wanted to allow her to share it here, not because the writing is brilliant (if you were looking for brilliant writing you certainly wouldn’t be reading MY blog), but because of the size of her heart. I present to you, Allie’s “Spark Talk”:
Sixty-five million. Do you know how many zeros that is? Six, thats six zeros. do you know what that sixty-five million represents to me? That represents the number of people living across the world today with epilepsy. Two hundred thousand is another number that means a lot to me. That represents the number of people diagnosed with epilepsy each year. I’m Allie Sparks, and for those of you who don’t know, epilepsy is a seizure disorder that causes from brain wave misfiring. A seizure can be any thing from shaking violently to rabid eye-blinking. People can have hundreds of seizures a week. Gran mal, eyelid myclonia and absence seizures are the most common. During a gran mal seizure they are unresponsive to their name and often stare off into space. They may also violently shake. A gran mal seizure can result in falling, bruises and even cuts. Eyelid myclonia is much less serious, it is rapid eye blinking and holding the head low. Absence seizures are when a person loses consciousness for a short period of time. This seizure is most common for those in adolescence.
How many of you have ever ridden a horse? I have an sister who has epilepsy named Shelby. She used to ride horses at a really cool place called Rocky Top. My family is almost positive that the horse Shelby rode could sniff out her seizures. He would stop for a minute and then Shelby would have a seizure. It was pretty cool.
Highly impacted children with epilepsy can’t ride a regular bike. They can’t do a lot of things that we can. Some of the things that they can’t do were fixed by creative minds who wanted to help. The Duet Wheelchair Bicycle Tandem lets kids like my sister ride a bike. The Make A Wish foundation granted this amazing wish for my family, so now when me and my dad go bike riding we don’t have to leave Shelby at home with my mom. We can bike ride as a family. There are still some things that kids with epilepsy can’t do that haven’t been fixed by creative minds. Thats why I want to help. I want to be that creative mind and fix these things that they can’t do. I want people to come along side me and many doctors who want to make the world a more fun and easier place for kids with epilepsy to live in. I want to make a difference and I realize now that’s all I have ever wanted to do. I want to change someone’s life.
You have probably gone to summer camp before or something kind of like it. Of course there are some camps for special needs kids, but they can cost thousands of dollars. I would like camp options to be cheaper. One of the reasons why camp options are so expensive is because they have to hire and train staff. I don’t want them to have to hire staff. We should volunteer! When you turn sixteen you are allowed to volunteer to be a camp counselor at an Epilepsy Foundation summer camp. As soon as I turn sixteen you can guess where I will be during the summertime. Yep! You guessed it. I will be at an Epilepsy Foundation summer camp. There are lots of summer camps like Camp For All, Texas Lions Camp, Camp Kaleidoscope, Camp Summit, Camp Blessing, Camp Neuron and Deer Creek Camp. Some of them cost up to two thousand dollars.
Most kids with epilepsy look just like we do until they have a seizure in public. Then most kids exclude them, don’t except them and some times don’t even look at them. I know the feeling. I have seen my sister be excluded for years. It breaks my heart to see kids with epilepsy who are unlike and thought to be weird. I have had a ton of kids ask me what’s wrong with her. Don’t get me wrong, I love educating kids about her condition. It’s just the way they look at her, like she’s not there, or that she’s so different from them that they won’t even look at her. I want kids of the next generation’s brains to change so that they don’t look at how they are different. They look at how they are the same. Even though Shelby’s condition causes her to act like a two or three year old, she likes things that a fifteen year old girl would like. She loves perfume, lip gloss, and hogging the mirror. She loves dogs and hugs. She may not look like you but she is the most loving and compassionate person I know.
I am a sibling of a special needs child. Many siblings have taken on the responsibility of caring for their siblings. Being the sister or brother of a special needs child is life changing. If it wasn’t, I wouldn’t be up here talking about it. Some of you might not realize how serious epilepsy is. When Shelby was , she gran mal seizures so often that before we went on vacation we researched the hospitals in that area. Even though Shelby is 15 now, my mom is still called to give her medicine at school or even take her home. I believe that school boards should train their special ed staff more on how to deal with seizures. Shelby should be able to go to school just like all of us and I hope you agree. As you can see, I have learned to love kids who are different than I am. I hope you do the same.
“I’m not disabled. I’m differently abled.” That was said by Montel Williams. Shelby may not be able to do all of the things that we can, but she can probably do them a little differently. Shelby can’t talk as well as we can so she goes to speech therapy every week. She is getting a lot better.
So what now? There are a lot of ways you can help. First of all, you can go to www.eftx.org for more information and to donate to fund further research that could some day find a cure for epilepsy. You can also go to thesparksnotes.com for more information on Shelby and my family. I have been a guest blogger there.
All of this talk about epilepsy and I haven’t told you why the name of my speech is “The Impossible Catch”. Don’t be scared. You can’t catch epilepsy. Now I’m not saying that when you grow up you have to be a neurologist, or someone who helps special needs kids. You don’t have to wait until you grow up. You can start now! No matter how short or how tall, you can make a difference in someone’s life. There are so many people out there who could use your help. They are ignored, excluded and left out. You can be a friend. Show them they are well liked, and you care about them. You can make a difference.