Chelsea's Legacy

This week I was privileged to attend the annual Chelsea Hutchison Foundation dinner and silent auction.  Chelsea passed away unexpectedly from SUDEP two years ago.  She was only 16 years old.  Since then her parents have started the Chelsea Hutchison Foundation in memory of Chelsea.  They raise awareness about SUDEP, give grants to people who are getting a seizure alert/response dog, and pay for EMFIT movement monitors for those in need of one.  The benefit this week, from what I hear, reached it's goal of raising 50K.

I was invited to attend this event and tell my story.  I am honored to be part of such a great foundation and I am leaving Colorado today with a promise to myself to work harder at raising epilepsy awareness and money for this foundation.

I have met so many awesome people this week, most of which I know from facebook.  This week has been nothing short of amazing. 

Alice, a seizure alert/response dog who alerted to my seizure at the event.

Me and Julie, Chelsea's mom.

Me with Robert and his seizure alert/response dog, Patches.

I also got to meet my new puppy that will be trained as my seizure response dog.

I am sad that we are leaving Colorado today but I am looking forward to seeing all of these wonderful people in less than 2 months.

Chelsea must be smiling down from her heavenly view, happy at the people she is bringing together...

Candid Talk With Kait

QUESTION: "How old were you when you started having seizures?"

KAITLIN: I had my first tonic clonic seizure on December 13, 2008.  I was 11 years old.  Up till that point I was your typical, healthy kid:)

There's no such thing as failure, only learning experiences...

As most have already heard we made the decision to allow Echo to resume his family dog status in our household.  He's an awesome dog but we could tell that he just wasn't happy going shopping:)  I would much rather have a happy pet than a stressed out dog.

My parents and I have been talking about getting a true service dog and we are pursuing our options.  My mom would love to have some peace of mind that comes with a service dog.  For her, the alert isn't as important as the response piece of it.  She said she will rest easier when I'm out and about if I have a trained seizure response dog by my side.  She knows she has to let me spread my wings but would feel much better if I spread my wings in the presence of a canine companion...

Training Echo has been a great experience for me.  I've learned a lot through various trainers we have worked with.  We plan on moving onto advanced training with Echo using our current trainer, Rob.  He's phenomonal with Echo and Echo enjoys his training sessions.  This will give me experience for future endeavors. :)

Candid Talk With Kaitlin

QUESTION:  "can you remember before you have a seizure... do you know if you have had any strange tastes, smells, or sounds they could indicate a seizure coming on?"

KAITLIN:  HA!  That's the question I get asked every time I have a seizure.  No, I don't have any type of "aura" before my seizures.

Candid Talk With Kait

QUESTION:  "I know you are home schooled now, have you ever gone to public school? Are you home schooled because of your Epilepsy?"

KAITLIN:  I have been homeschooled since the second half of kindergarten.  I just wanted to be like my big brother who was in 7th grade at the time he asked to be homeschooled.  Yes, I tried public school in 4th grade for 3 months and HATED it.  I enjoy the freedom of home schooling.  And of course, sleeping in every day has its benefits:)  I was diagnosed with epilepsy a little over 2 years ago. So no, I am not home schooled because of my epilepsy.  My mom always gives me the choice each year of continuing with home schooling or going to public school and each year my decision is always the same: HOME SCHOOL. :)

Candid Talk With Kait

QUESTION: What does it feel like to have a seizure?

KAITLIN:  I have three types of seizures.  I have simple partial seizures which create intense stomach pain and nausea.  Sometimes they make me throw up and I sleep afterward.  Sometimes I don't throw up and just sleep from it.  And sometimes I don't throw up or sleep but am kind of "out of it" as in I am a little clumsy, tired, and just feeling "blah".  I also have complex partial seizures.  These are hard to explain but I'll try.  I don't feel these coming on and don't even know I'm having one until after it's over and someone tells me I had one.  I hear everything and think I'm responding to people but I'm really not.  It's kind of like the world is moving in slow motion.  What others see is that my head and eyes turn left and my left arm might stiffen and I appear to be staring.  I am usually a little tired after these but I don't usually fall asleep.  I usually feel 100% better within an hour of this type of seizure.  The last seizure type I have are tonic clonics.  I don't feel these coming on and I don't know they are happening.  I don't remember them either.  When I come out of a seizure I am really, really tired and my muscles are really, really sore.  Sometimes I am more tired and more sore than other times.  What others see is that I usually start by having a complex partial and it spreads to a tonic clonic.  Right now it is possible that I am still having multiple seizures a day that I'm not aware of and that my parents are not aware of.  My last VEEG showed that I was having 50 + smaller seizures a day.  They are so short (3 seconds) that I don't even know it's happening and chances are you wouldn't know it's happening if you were looking at me when it happened.  Seizures don't cause me any type of pain when they happen.

Candid Talk With Kait

Over the next few weeks I will be taking some time to answer some questions that others have asked regarding epilepsy.  My goal is to help people affected by epilepsy and help them realize that life doesn't have to change all that much.

QUESTION  #1:  What's it like having epilepsy?

KAITLIN'S ANSWER:  Having epilepsy doesn't feel any different then when I didn't have it.  I am still me.  I take medicine every day to control my seizures.  It's important that I take my medicine every day, on time, so I don't have break through seizures.  My mom tries to get me to eat healthier, but I'm a picky eater so that's a challenge.  I have cut down on processed foods (JUNK FOOD and FAST FOOD) and have also decreased the caffiene and sugar intake.  I also make sure I get plenty of rest.  I still like everything I liked before my diagnosis such as: art, music (drums and piano), video games, swimming, roller coasters, and being with my friends.  Epilepsy doesn't change how I feel or what I like, it's simply something I have that makes me unique.  1 in 100 people will be diagnosed with epilepsy.  I am 1.  I think that makes me pretty darn special.  I refuse to let epilepsy control me, I do the best I can to control it, and that's all I can do.  I refuse to be afraid of having seizures.