Last year, I shared with you a friend of mine has a dear little boy who has epilepsy. Over the last few years, I have worked with families and campers whom have had and struggled with Epilepsy and many other disabilities; since December 2009, I have seen the struggles first hand with Denise and her family. You can read my original posts here, here and here. In Honor of World Epilepsy Day in addition to wearing purple, I have asked Denise to share a little bit about her family's, struggles, triumphs, concerns and joys. For more information on Epilepsy, please check out the Epilepsy Foundation's website by clicking here.
Evan's Story: (as told by his Mom, Denise):
Evan was born a healthy baby weighing in at 9 lbs 1 oz..He hit all his developmental milestones within the "normal range"..at about 18 months I was sort of concerned with his speech from comparing him to other kids his age..Everyone said "don't worry..he is a boy..don't compare..etc.. By his second birthday, I was really concerned with his language..I mean he said a lot of words and could label things, but really wasn't using functional speech..I knew in my heart something was off..Then our nightmare really began..

In November of 2009, my husband kept telling me that Evan is making these odd jerking movements with his arms..kind of like a startle reflex..I kept brushing my husbands concerns off because I am the one home all day with our son and I had never witnessed it..Then, I happened to be home one night when one of these incidents occurred..He was running around playing and all of a sudden he stopped, ran to me, and then this " startle reflex" movement started ...First thought was..OK first thing Monday morning I am taking him to doctor..then all night into the next morning these movement kept occurring..I then just picked up the phone and called the E.R triage nurse and explained to her what we were seeing..she said "bring him in sounds like seizures" In my head, I was thinking..seizures..these aren't seizures..but took him in of course..we get there and are asked a ton of questions.."does he ever just fall..does he turn blue from not breathing..how is his development (at which I did say all on target except I worry about his speech)..then he had an "episode" in front of the doctor ..and they said "yes, these are seizures" so from there we were admitted..He had a CT scan right the you and there, but we had to wait until the next day for the EEG.. CT scan came back normal..so no lesions from injury or stroke..

Then the next morning they took us the the Epilepsy monitoring unit for a routine EEG..a 45 minute test where leads are attached with glue to multiple areas of the head to read his brain waves..they left the leads on his head and sent us back to his room..The neurologist walked in and said..we want more info so were are gonna send him back down to the Epilepsy Monitoring Unit overnight for a Video EEG..they started him on medicine ..I asked why..and as she was walking out if the room turned around and said.." because he has Epilepsy" then left..At first I thought.."hmm..well no big deal ..medicine will fix this and he isn't having gran mals so he will be ok..Well fast forward a month..after more tests..MRI..spinal tap..genetic testing...no found reason for the seizures but also the medicine was not helping..Evan was diagnosed with multi-focal complex partial secondarily generalized seizures
Fast forward to April of 2010..at this time he is on 5 seizure meds and still having multiple seizures a day..and through out these few months I am reading all the horrible things seizures can do..ALL SEIZURES are BAD..every seizure causes brain damage and this is why my son now has developmental delays ( remember how I was worried about the speech??) Yup because of seizures he is delayed in speech..fine motor and gross motor abilities..I also have to worry about SUDEP which is unexplained death in Epilepsy..So since the seizures were still occurring even with all the meds we tried the Ketogeni. Diet..which is a high fat low carb and low protein diet..we tried it for 10 months and that also failed him..nothing has worked to control his seizures..

Through out our journey the last 2 years I have come to realize what a beast Epilepsy is..more people die each year from epilepsy than breast cancer yet it is the least funded and least talked about..In the past year I have watched online friends which I refer to as my family lose their children due to seizures..and it is heartbreaking and gut wrenching to see my friends lose their children..And it is something g that I worry about everyday..I don't sleep well because I am constantly checking to see if my child is breathing as he has many seizures in his sleep..

I will say Evan is a fighter..always a smile on his face and he lights up a room. When he enters..He never goes unnoticed anywhere!! He is the biggest joy..The doctors do say how impressive he is..as his EEG is so messy that he should be severely delayed..He is 4 now and has been battling seizures for two years..He does tons of therapy for his speech and has really progressed recently..He knows his ABC's he can count to 10 and knows his shapes..His biggest hurdle is his attention span..as he does have some sensory issues which cause him to sensory seek..and he still puts everything I have in his mouth..we have to watch him like a hawk because he is very impulsive and really doesn't have the best sense of danger..But he is progressing..but with tons and tons of work from me and all his therapists..but because of the daily seizure he still is at high risk of regressing..

There is no cure for Epilepsy and Evan will more than likely deal with seizures the rest of his life..My hope is that one day Epilepsy will get more funding and the attention it deserves and that a cure will be had..because it is a very serious disability and people have lost lives..babies have lost lives..
Are you wearing purple today to help find a cure?