This Months FIGHTER.........

JULIA!!!

 I am so excited to introduce you to this months Fighter Julia! We have met some amazing kids whose stories were told by there equally awesome moms but I wanted to do something different this month.  I wanted to introduce you to a teenager and let her tell you her story herself.  I hope you enjoy reading this beautiful young ladies story and it inspires you to support Epilepsy Awareness!!

Childhood years are supposed to be filled with joy and laughter… a worry-free experience that softens the future challenges of life. Even now, I sit in my high school classrooms and listen to stereotypical questions from my teachers and peers. “What was your childhood like?” “What do you remember?” It’s amazing how many pleasurable memories seem to fade away and how the life-altering moments, stay with you. The year I was diagnosed with Epilepsy was the year my parents divorced, and those are the two days I remember in specific detail.

I remember sitting in the waiting room at Children’s Hospital of Philadelphia feeling scared and wondering what was going to happen to me. I was told that I had a disease called Absence Epilepsy. 

The way I explain it to people is that I blank out for two to six seconds and then I get a feeling when I “come back”. Almost like my brain is sending me a signal saying, “Snap out of it Julia!”

For most of my life, my Epilepsy was controlled. I would take Zarontin every day, twice a day, and every so often, as I grew, they would raise the dose. But I would always be seizure-free. I use to hide my Epilepsy and keep it a secret. I remember having my first sleepover in 6th grade and crying because I was so embarrassed to bring my medicine bag over my friend’s house. My mom would decorate it, make it as pretty as possible, and I still wouldn’t want to.

As I got older, my body stared to change, and the Zarontin wasn’t really cutting it. Earlier this year, the week before prom, the stress from school, prom, grades, cheerleading, and potentially getting my permit to drive was overwhelming.  I turned in the paperwork to get my permit, and had a seizure THAT DAY.  Now I can’t drive for at least a year – every sixteen year old’s nightmare. To regain control my doctor put me on an additional medicine - Lamictal.  

As I was growing up I didn’t really know much about my Epilepsy. I never really cared enough; they told me it was going to go away once I hit puberty. So I believed them. My family physician also told me I was expected to be 5’3”. I also believed them. Okay so I am 16 years old and 4’11” with epilepsy. Do I believe in human error? Yes. What I learned to do was to just deal with it. If I am going to have this all my life I might as well like it. There are always bumps in the road with my Epilepsy. There will be bumps in the road with anything you do. So what I can’t drive for awhile? That isn’t really that big of a limitation, although it took me a while to come to this place.

As I have gotten older and researched my Epilepsy, I have become more comfortable with it. I don’t mind telling people anymore. I don’t feel like it is something to hide.  Every year when I go to Children’s Hospital, I see so many children whose diseases are more visible and severe, and I feel strangely grateful.  I know it could be so much worse.

My Epilepsy is “idiopathic”, meaning no one knows how I got it.  It could be genetic or it could just be pure luck. In my case, I believe it’s luck.  Because of my Epilepsy (and Asthma, and some non-specific learning challenges), I sometimes need to work harder to achieve my goals.  I have learned to communicate better, to be more strategic, and it has given me greater empathy for other people and their own challenges.  Because of my Epilepsy, I take my health more seriously.  Teenagers are faced with many important choices and peer pressure.  Because of Epilepsy and understanding the importance of my health, I take pride in making the right decisions.  I am captain of my school’s Varsity Cheerleading team, and participate on a level three All Star Cheerleading team as well. I am proud of my athletic and leadership accomplishments, and will not let my Epilepsy hold me back.  I don’t use it as an excuse – I am determined to move past it.  

I hope you enjoyed reading Julia's story and how this brave young lady is not letting epilepsy win!   Also, please do not forget that November is Epilepsy Awareness Month! Please talk about it to everyone you know.  Chances are someone you know may have epilepsy.  Would you like to show your support? Then please consider registering for our 5K Run and Fun Walk at the Philadelphia Zoo.  Please visit www.eraceepilepsy.com you can also donate directly to KARE Foundation by clicking on the donate now button on the blog home page.  Thank you for following us and until next time!

This Months Fighter: ANDREW!

I would like to introduce you all to our September Fighter: Andrew! He is an absolute doll and has the best mommy and daddy a boy could ask for! I am sure you will agree!!

 Here he is! Chubby cheek smile and all!! There is Sammy too!

Our bad dream started shortly after Andrew turned 6 months old.
I call it a bad dream because everyday my husband and I pray we will wake up and this all would have been a bad dream.  Around the time when Andrew was 5 months old I realized it seemed as if he had been regressing. I took him to the doctor right away but being a first time mom they brushed me off and told me I was just a nervous nelly. Then around 6 months he started doing this very strange jerking movement. Once again I took Andrew back to doctor this time with video and once again I was told babies do strange things, try not to worry so much. So I tried as best I could. But he didn't out grow those movements and it was becoming very clear that the skills he once had were not coming back. So I did some research on my own and what I found tore me apart. I discovered Andrew may be suffering from Epilepsy but what is that I thought? I had never knew of anyone who suffered from this. Even worse I discovered the type of seizures he maybe having were called Infantile Spasms; sounds innocent enough right? That's what I thought until I read on... 

These type seizures are very hard to stop, they come with a high probability of mental retardation and also a high probability of developing Lennox Gaustaut Syndrome. We took him straight to the ER and after spending an overnight at CHOP getting a Video EEG our biggest fear was confirmed and thus our nightmare began. My mind rushed... Would I ever see my baby smile again? Just one of the skills he seemed to lose...

The doctor very causally put him on a steroid treatment and sent us home as if he had only a little cold. The steroids were a nightmare. He developed cushionoid syndrome and only slept about 3 hours a day. He was so uncomfortable and literally cried all day. It was horrible. But after a month or so I noticed the Spasms stopped. And I was teased with dream that the nightmare was over. We were finally awaken from this bad dream! Andrew was seizure free for about two months but the ugly epilepsy roared it ugly head again and took my baby from me ironically two weeks before his 1st birthday. We have been riding this roller coaster ever since just praying for the day we can rejoice because the bad dream has finally ended. Andrew has been on a few different types of medications and is currently on the Ketogenic Diet.

Andrew is amazingly strong and resilient. He will be two this September and he is the light of our lives. He beats the odds everyday. He walks and has even said Mama and more before. These are things we were told he would never do. He recently became a big brother and already is so in love with little Sammy!! We've learned to count our blessing at the end of the day, that's not to say I don't cry when I see my baby knocked down by a seizure. But if he can get back up and smile then so can I. Andrew is my strength and his laugh keeps strong on my weakest days. I know it is only a matter of time until this nightmare comes to an end.

 This is what Andrew thinks of Epilepsy.  I agree, do you?

Well that is my little buddy Andrew! I hope you enjoyed learning more about him! Please take a moment to wish him a Happy Birthday!!!

Holiday Toy Drive for CHOP!

HOLIDAY TOY DRIVE!

KARE Foundation is once again collecting toys for Children's Hospital of Philadelphia this holiday season! Please see wish list below:

- playdough
-playdough tools
- little people figurines
-DVD's- PS2 games (we can accept used ones)
- cause and effect music toys (v-tech, fisherprice, etc.)
- puzzles
- crayons, markers, colored pencils, sharpeners, kid scissors

They CAN NOT accept any stuffed animals due to kids with high allergies to dust. 

Please note the above is just an idea and they can use all sorts of stuff! Please email Rose at Rose@karefoundation.org if you are interested in donating! Thank you for your support!!

*we are also looking for drop points please let me know if you can help that way*

Our First Spotlight Kid!

Everyone please meet one of my many heroes: Nicky! You will find I have lots!! These kids are so very special to me and I hope they become special to you as well!

Dad,Nicky and Mom! He is so cute!

It was a September afternoon when our whole world came to a crashing halt and everything in our normal lives changed forever. Sitting here just thinking about how this past year has changed brings tears to my eyes, tears of pain, tears of strength, but most of all tears of hope for our “Rocky” our fighter Nicholas Robert Anderson.

When Nicky was brought into this world on a cold Dec night being born 6 weeks early weighing only 3 lbs, he shocked all the doctors by breathing on his own and his lungs were fully developed. The Dr’s told us his cord was wrapped around his neck four times and in it was in a true knot (like a pretzel) and they have only seen that two other times my husband and I knew at that moment that he was given to us for a reason and he was a fighter. All the nurses in the NICU were calling him a Christmas miracle, hence the name Nicholas. One of my best friends started calling him Rocky and that is a nick-name that he still carries to this day.

It was 3 years later when Nicky, who was our healthiest child, was outside with his older brothers Gavin who was 8 and Jakob who was 5 and they were running around playing tag and just happy to get another day outside with no worries in the world. The boys had just finished up their homework and a snack and I told them go outside and I will be right out and as I was walking out the phone rang and I turned around to get it and it was my mom and were talking about the boys day at school. When all of a sudden Gavin came in from the back door and Jake came in from the front crying and yelling mommy mommy help there is something wrong with Nicky he is not moving and he won’t answer us and he is shaking. I hung up on my mom and ran outside and there was my baby laying on the grass and everything I ever learned in my CPR class and first aid class just went out of my head. I kept calling his name and yelling help help and thank god my neighbors came running out and helped me. My one neighbor took my boys, my other neighbor called 911 and my other neighbor checked his breathing. All I could do was lay down next to Nicky and I kept saying over and over to him was wake up Nicky wake up baby. At that moment my whole life just froze and at that moment I knew it could all be taken from me. The cops were there in less than a minute and not far behind were my mom and dad (my dad was a cop and they called him to tell him his grandson was unresponsive on the front lawn). The cop and my dad were the ones who were working on Nicky and all I wanted to do was be with him but the cops made me go sit inside so they could work on him and all I could hear were the EMS talking saying he was down for 3 minutes and we need to get him to the ER fast. They wouldn’t let me in the back of the ambulance they made me sit in the front because he was going in and out of consciousness and they needed to be able to work on him. When we got to the ER they did a quick CAT scan and ran some tests and said to us ok so he had a seizure and follow up with a neurologist. I looked at the doctor and said I am not taking him home with me tonight and she said ok let me see what I can do the insurance company’s don’t really like to pay for over nights when he’s ok now.. WHAT!!!! So she talked to some people and said ok we will admit him. And that was the start of the many video eeg’s.

The Doctor’s came in and said ok so we found some blurbs on his EEG and it looks like he may have Epilepsy so we want to do another one to see if anything changes in 2 weeks so come back and I will send you home with some Diastat in case he has another seizure because he most likely will . So two weeks later we went back and did another EEG and yup the doctor said it looks like Epilepsy so we want to start him on Depakote. After that for the next 5 months Nicholas was in the hospital every month for seizures he began to have staring episodes, having seizures in his sleep I would find him in his bed in vomit, he would have seizures and have BM in his sleep and he started having what we call is the “hoots”. This type of seizure is myclonic seizures they are very quick but his head jerks arms jerk and he makes the sound like hoot. The Doctors were trying medication after medication and nothing. They had him so doped up that he fell and cut his face or he would sleep all day and was just not my Nicky. We celebrated my older son’s Birthday in the hospital,

we were in the hospital and got out on Christmas Eve and every time we kept saying to the Dr’s if you can’t figure out what is going on just let us know and they kept saying no no we just want to try one more thing. In January the doctors wanted to wean him off the depakote and try an IV drip of phenabarbatol and man o man was that the worst thing in the world. He cried in my arms the medication hurt and he looked like he had a stroke he could not move and he got a fever. Nicky was poked with needle after needle and test after test. After they saw that this medication was not working they said let’s try one more and Brian and I said NO he is not a guinea pig . That is when I called Rose (who reached out to me through a friend) I was crying and she just listened and said go see Ky’s doctor at CHOP he will make him better. So with that we asked the doctors to be honest with us and tell us honestly have you ever seen a case like this and they looked at us and said no you need to go and get a second opinion so that I did with the help of a great friend.

So after 4 weeks of waiting our time had come to head to CHOP (Children’s Hospital f Philadelphia) and even though our appt fell on my birthday I didn’t care I just wanted to get some answers. Meeting with the doctor was one of the best things that ever happen to us and Nicky, he was very intrigued with what he saw and yet hopeful and honest and the best part he talked to Nicky on his level and explained everything to him and made Nicky laugh and I knew this was a good fit. He went over all of his paper work, and we answered a lot questions and we asked him have you ever seen a case like Nicky and he said to be honest only two but he looked at us and said let me do the worrying for you don’t worry because I’m not.  He wanted to try him on one medication that the other doctor’s didn’t try and he tried 12 medications and none of them did anything for Nicky. So Nicky was back in the hospital two weeks later having a 48 hr video EEG and he was getting ready to have the most dreaded test any parent thinks of: a spinal tap when the doctor walked in and said he doesn’t need one I think I know medication that will help him. I saw lots on his EEG and we were so excited and with that another medication failed and another heart break for us. With that the doctor called us and said look we need to discuss some other options that may work for Nicky and that is when he mentioned the Ketogenetic diet and asked us to take the class to learn about the diet. We had to make our mind up because Nicky was getting worse and was on no medication and he was up to almost 30 seizures a day sometimes more. So we went and took the class to learn about “this diet” the doctor was pushing us to try and swore it would help Nicky. We listened to the facts, listened to the team talk to us and met other parents who were in the same boat as us and we were coming around to the fact that this may work but what changed our minds was when another set of parents came and talked to us and told us how their son was just like Nicky and within 7 weeks of being on this diet he was seizure free. Maybe the doctor was right maybe this could work for Nicky and at that moment I was going to stop feeling sorry for myself and made the choice that we would do ANYTHING to make our little fighter better.

One month later we found ourselves back at CHOP and having another MRI and heading back to 9south. I had said to the doctor I know Nicky has had MRI’s at the other hospital and you looked at them and you said they had nothing on it but I have a gut feeling and I asked him to please do another because the MRI machines at CHOP have twice the resolution and he said ok while you are here to start the diet we will repeat it. When you start the keto diet they have to do many tests to make sure your body can handle it and when you start the diet you have to be monitored by the team of doctors and we had to take classes to learn more about the diet. We could have never prepared for what this week was going to throw at us and all I can say is I would not wish this week on anyone. The keto team warned us it was going to be a rough week but we could do this. Seeing my baby lay in his bed with tubes coming out of  his body just killed us inside but we leaned on each other to get through this dark week. On day two we were sitting in Nicky’s room when 3 doctors’s walked in and they closed the door behind them (and everyone knows that’s not good news). They looked at us and said well we found something on his MRI and I could feel my knees buckle and they said well he has a lesion on the left side of his brain and that is what is causing his seizures. At that moment it felt for me like I was punched in the stomach and at the same time I felt a sense of relief. After we sat and talked to our team of doctors it was game time Brian and I decided there was no turning back. The rest of the week for us was heart breaking as we watched our little fighter fight the fight he was vomiting and slipping into a glucose sort of coma and the doctor’s had to work on him and they had to prepare us for the fact that he may be getting a feeding tube and that just scared me . On our last day there I was getting things ready to go home and I had to measure out his food all by myself and I just lost it and started crying because the fear had taken over at that very moment and I felt so alone. Thankfully the most amazing team of nurses saw me in a ball outside of Nicky’s room and they came and lifted me up gave me a hug a kind of hug only your mom could give you and they said you will be ok just let it out. After that cry I said to myself I am not going to have a pitty party for myself I am going to get myself together and do this for my son (that is the kind of pep talk my mom would say to me if she was here but she was 3 hrs away taking care of my other two boys). When we left the hospital the keto team said the most important words to me that I carry with me every day she said: on this journey you will face many storms but just remember after every storm is a beautiful rainbow. That my friend is so true when you are fighting this demon called Epilepsy.

Through the last year our lives have changed so much and I know god put Nicky in our lives for a reason at the time I didn’t know why but I have now learned why to bring my family closer to make us realize to slow down and enjoy each day . Brian and I have the most amazing family and friends who have rallied around us and they have helped us through the darkest hours and the happiest hours. The doctors told us when you have a sick child your marriage will be put to the test and it will either make you stronger or it will tear you apart and I have to say it has made us so strong he is my rock when I am weak (and I have had my moments when I just started crying and he just is there to hug me) and I am his rock when he needs one. The days of just picking up and going are gone for now and the days of a simple cold being just a cold are also long gone because we will end up back in the hospital but that’s ok because I have learned to enjoy my family and I am enjoying my new normal.

As of today Nicky has gone from 30+ seizures a day down to 5 a day and it is only going to get lower as they tweak his diet

Nicky and his beautiful family!

Well friends that was Nicky's story! I truly hope you enjoyed learning more about this little man and seeing another side of epilepsy.  Nicky is another reason we must find a cure! So please Join the Fight and help us stop this demon called Epilepsy!

Welcome!

Hello and welcome to our blog! We hope that you will enjoy reading about our little fighters! We also hope that you will be educated more on the prevalence of epilepsy and the need for more research and ultimately a cure! We here at KARE Foundation are committed to fighting for our warriors and hope you will join us in The Fight! If you are interested in sharing your son or daughters story please email Rose@karefoundation.org and feel free to include a photo.  For your privacy no last names will be used in the postings.  If you would like to submit an article on epilepsy feel free to email me as well.  Thank you for following along and bringing us one step closer to a cure!

Rose Stolarz
President/Founder
www.karefoundation.org