Our January 2012 Fighter.........

CHRISTOPHER!!!!!

Chris & Bronx

I am so very very excited to introduce you to our newest KARE Fighter Christopher! I just recently "met" Chris, Bronx and his awesome mom Janet thru an awesome organization Wish Upon A Hero (http://www.wishuponahero.com/) and instantly fell in love! I really have to say it again that these kids hold such a very special place in my heart. They go thru so many battles and hardships each and every day but they still smile! Like one mama had mentioned you can see the FIGHT in these kids eyes and you really can! I hope you enjoy learning about Chris and Bronx and that you come to love them as much as I do (if that is possible :->)

I decided to something different this month and start with a Q&A with Chris then we will go into his bio.  Also, as you have come to enjoy amazing photos of my two new buddies! Thank you for learning more about Chris and another view on epilepsy! ~ Rose

                                                                               

                                                                                   

Question and Answer with Chris and his Mom

Q: What do you feel is the hardest thing about living with epilepsy?

The thought of having a seizure is scary and always looming...I am always afraid that the next seizure will send me into respiratory and cardiac arrest.  Most of my friends stopped hanging out with me because of it.  My childhood is limited by epilepsy and that sucks!

Q: What would you like others to know about epilepsy?

I would like people to know that just because I have epilepsy that I am still a person, not some alien.  That you can be my friend - my seizures are not contagious! I have seizures, I am not deaf - please do not talk about me - I can hear you! I have feelings!

Q: Chris, do you know when you are going to have a seizure?

Yes, most of the time I can tell when a seizure is getting ready to happen.  I get light-headed and sick to my stomach...then the seizure comes.

Q: Chris, what is the best thing about having your pal Bronx?

Bronx makes me feel safe! Before I had Bronx I was too afraid to sleep in my room - I was afraid I would die and no one would know.  The very week that Bronx was delivered I slept in my room - the first time in four years!  Bronx is my best-friend - he is always there to listen, he never judges me, and he never says mean things to hurt my feelings.  Bronx being with me means that I never have to go through another medical procedure alone!

Bronx is learning how to dial a cell phone which will give me even more freedom.  If I am away from the house and something happened Bronx will "bite" the special phone case and it will dial 911 for me!

Bronx is also my eyes! Because I can no longer see anything to the right side, Bronx was trained to be a guide dog.

Q: Mom, was it hard to get a service animal for Chris?

The first problem we ran into was the cost of the service dog.  Our health insurance would not cover a service dog - none - and most service dogs were about $10,000.  With all of Chris's medical bills that left us paying for his service dog out of the question.  If the program was "free" it was for older children and had a long waiting list.

I researched several kennels that trained services dogs for children, but some gave the children puppies, some did not use German Shepherds, most had very long waiting lists, some were outrageously expensive, and most would not deliver the dog to Chris.  We found Highland Canine Training in Harmony, NC: they would consider matching with a German Shepherd, they were reasonably priced, they would deliver the dog, and they did not have a long waiting list.

Now, how to raise $10,500 to get him the service dog?!  Our Pastor helped us fill out the application for a program in our church conference.  It was his hope that they would donate part of the money and we would have to fund raise for the remainder.  When the call came in I could not believe my ears - they were paying the entire amount!

Once Chris was accepted to the Service Dog program at Highland Canine we waited for the "Meet and Match" date.  We went to Highland and there were several dogs there that day, but Chris held out to meet the German Shepherd first.  Bronx came in the room and it was if they knew each other for a lifetime.  Chris and Bronx were matched and the journey began!

Q: Mom, what does Chris like to do for fun?

Chris is writing a second book "Before I Shake" and it is going to tell about life with Bronx.  Chris said to tell you that he is not drawing this time - it is going to be photographs of his life with Bronx.  It will cover everything from the match to present day!

He "kicked off" his own website - 1Boy4Change.  It has a store where you can purchase his books, his music CDs, his piano DVDs, his t-shirts, bumper stickers, etc. - all of this will help support charities of his choosing!  The website has a BLOG so people can follow his adventures with Bronx.  The website will be educating the world about children with service dogs and changing laws dealing with service dogs with children handlers.  It is a platform for him to share what he feels passionate about over the years!  It has links to "many" other sites that he supports!  He designed his own logo for the site - wait till you see it!

He enjoys building LEGOs and LEGO NXT Robotics - he has made a rattlesnake that shakes its tail and strikes, a scorpion that strikes and retreats, a remote controlled spider, and many vehicles that perform different tasks.  There are two videos on YouTube about his LEGO robots!

He enjoys doing kung fu forms, swimming and going to the beach.

He dreams of becoming a LEGO Engineer or a Service Dog Trainer and one day --- living in the Keys off Florida! 

I hope that you have enjoyed the Q&A with Chris and his mom and that you have equally enjoyed some of the photos! The following you will now read is the bio of Christopher.  His journey of where he has come from to where he is today.  I hope you enjoy reading it as much as I have!

I would like you to meet my "hero", Christopher Carswell! He is 13 years old and the bravest fighter I know...

Christopher has been fighting before he was even born.  I had a difficult pregnancy and he was delivered six weeks early.  He was born with multiple birth defects and health problems.  He showed everyone on September 1, 1998 that he was here and was going to fight!  The first three years of his life were governed by doctor appointments, tests, surgeries (some went well and some went terribly wrong), and therapy! We had a therapist in our home five days a week.  Every milestone was a reason to celebrate!

With all of the doctor visits, tests, and surgeries came no answers, no diagnosis - nothing.  The orthopedic surgeon reconstructing his right hand could give no reason for "why" Christopher had a birth defect that affected his hand.  The neurologist that was seeing him for the stroke and brain malformation could give us no explanation.  We were told that Christopher was at a high risk of seizures and he might have an autism spectrum disorder.  The doctor that did Christopher's tonsil and adenoid surgery, that left Christopher with a feeding tube, he blamed Christopher.  He told us that out two year old had an eating disorder - what?! He ate fine before the doctor paralyzed his epiglottis flap!  Our first pediatrician told the speech therapist that Christopher would never talk - to teach him sign language (sure am glad she didn't listen to the pediatrician)!  So many obstacles, but he kept smiling and fighting, even on days when I couldn't!

                                                                    

When he started public school we learned just how cruel young children could be... Christopher still had to have more hand reconstruction done.  When he told the children "why", that is when he was called names and alienated (as a four year old).

Throughout his elementary education he would miss so much school due to health issues.  Most years he would end up on the county's hospital home bound program.  When he would be healthy enough to attend school he was small and fragile looking - a very easy target for bullies.  Thanks to good teachers and a couple of great friends the bullies never got the best of him... His friendship with one little boy was going to save his life and no one knew it.

October 11, 2007 seem like a normal day in the life of third grader until lunch time at school.  Christopher and his best friend were seated for lunch with the Tonic-clonic seizures started and wouldn't stop.  Christopher's friend yelled for help and the nurses came.  He went into respiratory and then cardiac arrest, but God was with him - there was a paramedic squad around the corner from the school! By them time I reached the school the paramedics had Christopher in the back of the quad - he had tubes and lines everywhere!  The scariest thing is when I looked at him in the back of the squad and his little body was limp and his lips were "purple."  I knew from my experience as a medical professional that we were in serious trouble!  He was taken to the children's hospital in Jacksonville, Florida where he was stabilized and admitted to the PICU. None of the doctors could explain what was going on... Christopher kept fighting!

After he was released from the hospital he was so heavily medicated that he could not return to school.  He was a zombie on medicine - no longer happy or smiling.  We went back to the doctor, but he would not change his treatment plan for Christopher.  Time for Mama Bear intervention!  I started researching and calling hospitals that were supposed to have the best doctors, research, and treatments.  I ended up finding Miami Children's Hospital, the Pediatric Brain Institute and Dr. Ian Miller.  I explained everything to Dr. Miller and he admitted Christopher to the Brain Institute.  He weaned Christopher off the medication and monitored him twenty-four hours a day for two weeks.  He sent him home without daily medication (we were sent home with emergency medication) to see what was going to happen.  The Tonic-Clonic Seizures did not come back - he had smaller seizures, but we were willing to live with it as long as Christopher was.  He finished fourth and fifth grade with other medical challenges, but no serious issues with seizures.  He had bilateral leg casts and was in a wheelchair for three months, but at least it was not a serious seizure. 

As a family we decided that Christopher needed a service dog to improve his quality of life.  After researching and getting funding, Christopher was on the list for a "meet and match" at Highland Canine Training in Harmony, North Carolina - Summer 2010.  Christopher was matched with Bronx and training began.  While Bronx was being trained for everything Christopher needed him for we had decided to send Christopher to a private school for 2010-2011 school year.  We knew he wouldn't start school with Bronx and we figured it would be an easier transition in a smaller Christian school.

                                                                        

                                                

Christopher started sixth grade and was doing as well as we could expect.  He was still having health issues and we still had "no answers."   We went and visited Bronx and longed to have him home to help Christopher, but it would be months before he was ready to work.  Christopher started to have more seizures as we headed back to Miami. This time, Dr. Miller, put Christopher back on daily medicine and a new emergency medicine for us to use - "just in case."  January 2011 Bronx was delivered to Christopher! Everything seemed "right" in the world! Christopher had no trouble at school from the other children and Bronx seemed to "live and breath" Christopher! The joy would be short lived - Christopher's seizures got worse and two weeks after Bronx arrived we were headed to Miami to spend two weeks in the hospital... 2011 jut got worse from there.

                                                                                                                                              

Christopher was finally going to be diagnosed with epilepsy and that was the easy one (left occipital lobe damage causing the seizures).  We were told that Christopher has soft-spots in this skull now - Bilateral Parietal Foramina (yes, like the ones a on a newborn baby).  We would have to change his life-style to protect his head since there were two areas no longer covered by bone.  (time to get rid of our horses, his four-wheeler, no more P.E., no contact sports, no kung-fu except for forms, no more ziplines, and no more treehouse).  Then we were told Christopher was partially blind - he could not see anything to the right from either eye - Right Homonymous Hemianopsia (so he only saw the left half of anything).  He would never be able to drive and this was devastating since he dreamed of Classic Mustangs!  So, I was already counting three strikes, but it was not going to stop there!  We were told that he had Mitral Valve Prolapse w/trivial regurgitation, scoliosis, hyper-mobile joints and hypotonic muscles...  I couldn't even breathe at this point and then I look over at Christopher and he is smiling, hugging Bronx - fighting!

                                                                                  

We were sent home with Christopher on two different anti-seizure medications and a new "emergency" medicine.  The medicine made Christopher sleep twelve to fifteen hours, so I withdrew him from school and he started homeschooling with Southeast Academy Online.  He could do school when he was awake enough to think.  We took down the ziplines in our yard, we found homes for all the horses, but thanks to generous construction worker, Christopher did not lost his treehouse!  The man built a ramp and landing system all the way up to his treehouse!  Never being able to drive still hurts and he doesn't talk about it too often.  He enjoys the blessings and moves past the bumps in the road (better than me).

He is down to one medication a day now.  He is in seventh grade and making straight A's.  He loves playing the piano and donates his time to play at the senior daycare center.  He writes books and records piano CDs.  He started his own website - http://www.1boy4change.org/ - did it all, even designed the logo! He competes in the handicapable martial art tournaments - he won first place in his age division.  He loves to build with LEGO - he builds and programs robots with LEGO NXT! He loves to swim and go to the beach.  He seems to soak up every minute of everyday - living for the moment!

                                                                                  

 

I asked him about it once, his attitude... and he told me that he never knows what will happen with his health, so he doesn't want to live with regret of "not" doing something when he could have done "something!"  I wish I could be more like my son and that is why he is my "HERO!"

                                                                               

                                                                                

Christopher's life verse from the bible is: "We walk by faith, not by sight." 2 Corinthian 5:7

                                                                                   

I hope you have enjoyed learning a little bit more about Chris and Bronx! I also hope that you took away a lot from this blog post a few important things: People with epilepsy have feelings too, You can not "catch" epilepsy from someone that has it really that just are people like you and me and make really great friends! Most importantly live everyday like Chris does! As he had said he does not know what will happen with his health so why feel sorry for what you did not get to try.  Chris is an amazing young man who does so much for others I hope we can all be just a little like Chris! He also reminds me so much of Kyle, keep fighting and do it with a SMILE!! Chris is also training to be at our 5K Walk and Run at the Philadelphia Zoo, to find out more about that visit http://www.eraceepilepsy.com/.  If you can not join us I ask that you at least consider making a donation to Chris's page: http://eraceepilepsy5k.com/participant/6337 ~Rose 

                                                                               

                                                                           

                                            

We will be looking to have someone featured as our February Fighter! Please know that we can keep all of your information private and we do not need to share any photos if you do not wish.  If you are interested please email Rose@karefoundation.org.  It can be a newborn, toddler or teen.  If you are an adult that would like to share your story we would love to hear from you as well! ~Rose



                                                                

                                                                                                                                                           

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