Sudden Death Due To Epilepsy

November is Epilepsy Awareness Month. We will be hosting a month long campaign that will provide valuable information, facts, resources about Epilepsy, and what you can do to not only manage the day to day living with epilepsy but also become a voice to be heard. A crucial important fact regarding epilepsy that needs to be heard is Sudden Death Due to Epilepsy (SUDEP). [...]

By | 2014-11-01T10:00:37+00:00 November 1st, 2014|Categories: Epilepsy, Medical / Therapies|Tags: , , , , |1 Comment

Purple Day is a Day to Support Those Living with Epilepsy

Purple day is a day that is celebrated around the world to help focus and bring awareness for those who suffer from epilepsy and seizures. This day is celebrated every year on March 26th. It is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. We celebrate this day in the hopes that people will come to understand the seriousness of this disorder, but [...]

Spreading Epilepsy Awareness

Another year has just flown by and it's that time again time to Rock the world Purple! Epilepsy is not just an American disease it's a global disease. This is the time to spread awareness so that we can help our children / family members with epilepsy realize their hopes and dreams of living a life seizure free.  Spread awareness so that parents, family members [...]

By | 2013-11-18T09:00:27+00:00 November 18th, 2013|Categories: Epilepsy, Medical / Therapies|Tags: , , |0 Comments

Being Aware of Epilepsy

We’re 6 days into my purple lights and I can’t help but think of all that’s going on in the world.  I wonder if the purple is lost somewhere… if people make the connection of purple representing epilepsy; if anyone is even thinking about epilepsy.  About awareness.  I wonder if people realize that their neighbor, friend, or co-worker could have epilepsy.  That epilepsy is not [...]

By | 2013-11-06T09:00:23+00:00 November 6th, 2013|Categories: Epilepsy|Tags: , , |0 Comments

Cause of Seizures Can Be A Change in the Forecast

I've lived with epilepsy for over 5 years now, giving me a lot of time to learn about the condition, time to learn my triggers, understand my seizure patterns and frequency. Over time, more triggers (a cause of seizures) made their way onto my list, as if my epilepsy were growing like a thorny flower of sorts; limiting caffeine, getting plenty of sleep, eliminating stress [...]

By | 2013-05-17T09:00:58+00:00 May 17th, 2013|Categories: Epilepsy|Tags: , , , , |0 Comments

Today I am a Special Needs Mother, and It's Hard

For the record, I consider myself just a Mom.  I don't look at my situation with John and say, "I am a special needs Mom."  Handicapped? no, my son is not handicapped, that title is reserved for individuals in much worse mental and physical shape than John.  Today, however reality slapped me in the face, yes I am a special needs Mother, like it or [...]

Fighting Epilepsy One Night at a Time – Bridge of Hope Gala Dinner

Bridge of Hope Gala Dinner Saturday, April 20th, 6-10:30 p.m. Chicago, Il Epilepsy affects 50 million people worldwide and more than 2.7 million people in the United States; half of all patients are children The Epilepsy Warriors Foundation, Fighting Seizures One Child At a Time is hosting a gala to help raise money to fight Epilepsy. “We are hosting a Gala to shine a light [...]

By | 2013-04-08T22:57:43+00:00 April 8th, 2013|Categories: Epilepsy, Events / Activities, National|Tags: , , , |0 Comments

Sudden Unexplained Death in Epilepsy – It's Time To Talk About It

One of the many topics of conversation between Epilepsy parents is the lack of communication or discussion about SUDEP (Sudden Unexplained Death in Epilepsy) it’s not a topic any one wants to talk about due to the fact it deals with talking about death. Honestly I don’t know anyone that truly does like to talk about death let alone the death of a child or [...]

By | 2013-02-25T07:00:42+00:00 February 25th, 2013|Categories: Epilepsy, Medical / Therapies|Tags: , , , , , |6 Comments

What Do You Say When a Miracle Turns 10?

The happiness I have in my heart can hardly be given life with mere words. My oldest son, the one who has set us out on a journey that has tested our strength and fortified us individuals and as a family, turned 10 day. Ten. Double digits. The Golden Birthday followed by Golden Years. Admittedly, I’m panicking a bit inside… I have a 10 year [...]

On This Day, 6 Years Ago A Journey Begins

Six years ago today, J’s body and brain openly betrayed him for the first time… that we know of. Six years ago today, 9 months pregnant, I watched in horror as his eyes remained in the back of his head; as his mouth drooled; as his lips turned blue. Six years ago today, we unknowingly began a journey that has lead us through a number [...]

Epilepsy Is Not Invisible – Repost from Jackson's Journey

Originally published on Jackson's Journey This is me.  This was take a few short months before my first seizure on December 1, 2006.  After my first seizure, my sister was born within days and I turned four within a month.  Life changed. I was slowly trying to prepare Mom and Dad for what was to come.  I could feel it within me, the surge of [...]

The Epilepsy Network – An Interview with Founder, Tiffany Kairos

November is Epilepsy Awareness Month.  As part of spreading awareness, please enjoy this interview from a pioneer in Epilepsy Awareness, founder of The Epilepsy Network, Tiffany Kairos.   Hello Tiffany.   Thank you so much for taking the time to open up to Special Happens readers during such an important month for the Epilepsy Community.  First, would you please share a little bit about who [...]

By | 2012-11-13T07:00:10+00:00 November 13th, 2012|Categories: Epilepsy, Interviews, Medical / Therapies|Tags: , , , , , |0 Comments

You Say You Don't Want a Cure? Well I DO!

You say you don’t want a cure.  Well I do. I get why you don’t… this is a part of your child, an imperfect piece perfectly imbedded, merged, marinated, simmered and fused within every nuance of your child.  You can not separate autism, or epilepsy, or down syndrome, or whatever it is from your child without removing what makes him… him.  I completely respect that.  [...]

My First Experience With Epilepsy – A Mother's Tale

It was a little before bedtime.  J was enjoying a treat of watching “Finding Nemo” (his favorite movie at the time).  We sat on the sofa together.  He was nestled in the arch of my arm; it was towards the end of the movie. I was 9+ months pregnant with O.  C was in the kitchen, a glance away from us when the sound of [...]

Following One Boy's Hemispherectomy as Jackson's Journey Continues….

If there’s one thing our research has taught us, a hemispherectomy is no small surgery… though common sense says that too. A hemispherectomy “is a very rare surgical procedure where one cerebral hemisphere (half of the brain) is removed or disabled. This procedure is used to treat a variety of seizure disorders where the source of the epilepsy is localized to a broad area of [...]

Moving Forward… to Neurosurgery

In truth, this post is so very, very late. Though central to our life, I’ve neglected to ‘announce’ anything here. Caught up in the storm of scheduling, facts, theories, investigations and emotions, I’ve never quite found the words. ...and I wanted to find the words, the best words to explain what’s happening in our home. The enormity of what’s to come. The pains we’re feeling, [...]

Is It Too Much To Ask a Child To Find Strength?

by Gina St. Aubin C relays: When I took J to school, I told Ms. L about the little white car. I said, “It hasn’t left his hands...he took it to the dinner table, to bed, to breakfast...just so you know…” “That’s fine,” she said. “You know my single goal for J...all I want to do is to help hold him together. I just want [...]

Of Eggs and Life

Contributed by Cheryl Bailey I love to cook. I cannot remember when I was not at home in the kitchen. One of my first skills to master was the art of separating an egg. I needed to learn this trick for making meringue topping on cream pies my family ate after Sunday dinner. If you have ever made meringue, you know that the least bit [...]

By | 2012-05-07T09:00:04+00:00 May 7th, 2012|Categories: Cerebral Palsy, Epilepsy|Tags: , , , , , |2 Comments

No More Options – The Post I Never Saw Coming

It’s not just one piece of a puzzle that we juggle to fit. It’s not just autism - as if autism can ever be considered, “just autism”. SPD and Cerebral Palsy have been laid upon him as well. And intractable epilepsy...unmanageable, untreatable epilepsy. And for all I’ve done to educate myself...for all I’ve advocated for him...for all the research, theories tested, medications trialed, decisions labored [...]

By | 2012-04-24T09:00:42+00:00 April 24th, 2012|Categories: Epilepsy|Tags: , , , , , , , , , |7 Comments
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