Emily

Meet Emily, she is living with Epilepsy, here is her story.

Emily was diagnosed with Epilepsy back in 1999 when she was in junior high school, she is now 29 years old.  Her seizures didn't start out how people normally think of seizures.  She kept having "deja vu" moments.  Her mother took her to a couple of different doctors and each told her that she seemed to be making up her symptoms and wondered if she was just wanting some attention.  It was only after having 2 generalized seizures that the doctors confirmed she was indeed having seizures and had been for a while.  The cause of her seizures were never confirmed, she does not have a family history of seizures.  The only thing that comes to mind on how this could have happened were some falls she had taken while playing sports, a new acne medication or the Hepatitis B vaccine she had just had.  None of these can be confirmed, it can only be speculated. 

Back in 2000,the beginning of her senior year of high school,  Emily had her first brain surgery at Johns Hopkins in Baltimore, Maryland.  She had a grid of electrodes implanted and was scheduled to have brain tissue removed.  Unfortunately her seizures became so bad that the surgery was cancelled and the electrodes were removed.  Next she went on a special diet and had to fax her doctor what she ate and her seizure activity on a weekly basis.  Her mother found a new neurologist who specialized in seizures related to hormones, which most of hers seemed to be from.  The new doctor told her that she was a candidate for surgery and so she made the choice to once again go ahead with surgery.  She had part of her left temporal lobe and left hippocampus removed.  The doctors told her that the risks of this surgery would be complete memory loss.  She would need to take notes to remind her of people and things.  She did experience some memory loss but not to the extent that the doctors warned her about. 

In 2008, Emily received her seizure response dog Callie.  Her dog alerts her when she will have a seizure so she has time to go take her medication or if she is asleep, the dog will go alert someone else to help.  Emily still has seizures, mainly when she lets her emotions get to her.  She has taken a bunch of different medications and have been selected for studies but has yet to find any combination that completely stops the seizures. 

Emily says the biggest affect that Epilepsy has had on her life is not being able to be independent.  She cannot drive or go anywhere by herself.  It took her a while to get used to never being alone but eventually accepted it.  Last year however, she found the man of her dreams.  She had dated before but as soon as they saw her having a seizure, the relationship would end.  She made sure to tell this new guy about her seizures and his response was "I love you for who you are and will be there for you through anything".  He asked her to marry him in February and they married this past July. 

Emily is also very thankful to her mother and father who have stuck by her side and have tried to help find a way to stop her seizures.  When asked what she would like people to know about people living with Epilepsy, she said that having Epilepsy should not define a person.  Just because a person has Epilepsy doesn't mean that they need to be treated differently, Epilepsy will not keep people from pushing forward and it does not mean that they are not "normal".

Thank you Emily for being willing to share your story!!!!  Thank you for being a shining light and helping spread awareness!!!!!!!

Danny

Meet Danny.  He was a 4 year old boy whose life was cut too short because of Epilepsy.  Here is his story.

Daniel George Stanton was born on March 2, 2005.  He was the third child for Mike and Mariann and they couldn't be happier.  At 2 years old, Danny became an older brother as well.  Danny loved doing many things and was very good at athletics.  He mainly enjoyed kickball and basketball.  Danny loved making people happy, he would help his neighbors Pete and Betty carry in their groceries or help in the yard.  Family was very important to him.  He loved spending time with his mom and dad and was very content when he was with his siblings John, Mary Grace and Tommy. 

At 2 years old, Danny had his first seizure.  While sleeping in bed with his mom, his eyes rolled back into his head and he started shaking.  911 was called and they also took him to their neighbors house who also happened to be a paramedic.  That first seizure almost lasted 10 minutes.  At the hospital that night, they were told  that kids sometimes have seizures for no reason and that he could possibly outgrow them.  Danny's parents began having him sleep in their bed to monitor him.  Danny had MRI's and EEG's all of which showed no underlying cause.  He was never even diagnose with Epilepsy, he was diagnosed as childhood seizure disorder.   He was put on medications and told that he again would outgrow them. 

Danny's parents eventually had him sleep in his own bed but would frequently bring him back in after checking on him and finding him having a seizure, one time his lips were even blue.  Again, the doctors reassured the Stanton's that it was normal and never once did they mention the word death.  After a whole year had gone by, Danny was back in his own bed again.  It had been 18 months since Danny had had any known seizures and the Stanton's were happy.  They trusted that the neurologist had been right and that the course of action they had been taking was successful.

On December 12, 2009, Danny's body was found in his bed.  They tried to revive him, neighbors tried to revive him and so did the doctors and nurses.  Danny died in his sleep to something called SUDEP.  SUDEP stands for Sudden Unexplained Death in Epilepsy.  I am sure I do not even need to begin to tell you of the huge hole this has left in the Stanton family, the sudden loss of a child is a huge blow.  For many people, this becomes the beginning of the end.  Families will never be the same and they somehow just seem to get by each day.  This is not the case for the Stanton's.

Less than a month after Danny was gone, Mike and Mariann Stanton started The Danny Did Foundation.  They have made it their mission to spread awareness of SUDEP.  They have helped numerous families get an Emfit movement monitor that would set off an alarm if a seizure is detected in sleep (monitor issued is based on individual financial need).  You can find out much more information by visiting http://www.dannydid.org/.

With November being Epilepsy Awareness Month, The Danny Did Foundation is holding a campaign.  They are hoping to have 1,000 people donate $25 in order to raise funds to help them raise awareness.  As I write this $2,641 has been raised and we are only in the beginning days.  This foundation is not just another foundation I am writing about.  I am one of those people who have been blessed to receive an Emfit monitor.  I sleep so much better knowing that I will be alarmed if my daughter has a seizure.  Nothing would mean more than to help them so they can continue to help others.  Please take the time to go to their page and learn about Danny and how you can help.  After doing that, please go HERE to donate the $25 tax deductible donation.  You will be making a huge difference in someones life!!!

Luckily Danny was too young to know exactly what was going on.  He went about his days as any normal 4 year old would.  He played with his good friend Charlie, loved being around his Uncle George, age didn't matter when it came to Danny, he loved spending time with everyone.  And that is exactly the legacy his family would want you to remember him by.  Danny cared for others, he loved giving hugs to his mom and dad each and every day.  At such a young age he was able to comfort those around him in such a striking way.  He continues to do this even in death.  I don't know if his family was ever prepared for the amount of love that people would find for Danny, strangers whose lives have been touched by this special little boy.  Danny was a special gift to his family and continues to show his love for others through the work of his parents.

Please take the time to help, learn about seizures and what you can do if you see someone having a seizure.  And please, inform yourself on SUDEP, make it a part of your vocabulary and let others know as well.  And more than anything, please go and enjoy your life just as Danny did!!!!

Emma

Meet Emma.  She is 4 years old, she has Epilepsy and this is her story.

At 3 years old, Emma's mom knew that something was wrong.  For years Emma would stare off and seemed to lose balance a lot more than any other toddler.  Her family was in the process of moving to another state so her mom made an appointment with her pediatrician.  She was told it could be low blood sugar and sent her for tests.  Those all came back normal so she was told that it was typical toddler clumsiness.  Her mom did not feel comfortable with that diagnoses so as soon as they were moved into their new home, she took her to a new doctor.  The doctor briefly talked to her mom about Epilepsy and absence seizures and then sent them home without a diagnosis.  Things seemed to escalate very quickly, Emma's eyes were starting to roll back into her head during these staring spells and they seemed to last for longer than normal.  Scared of what this might mean, her mother took her to the emergency room.  The doctors there were concerned as well and got her an appointment with a neurologist for the very next day.  During that visit, an EEG was performed.  Emma was asleep during the EEG and her mom lay beside her.  Her mother noticed her twitching while she slept and each time that happened she looked at the nurse performing the test and by the look on her face, she knew, Emma was having seizures.  The doctor later confirmed what her mom already knew.  Emma was started on a medication and was told to come back in 3 months. 

The medication Emma was put on suddenly changed her sweet, loving personality and her seizures seemed to get worse.  With a call to her neurologist, a new medication was added.  This new medication only escalated things and Emma became volatile towards her sister and would even get sick from time to time.  After giving her a second dose, a rash was noticed.  After a call to her new doctor, Emma's mom was told that it was probably just the flu.  Her mother ended up switching to a new neurologist who performed an MRI on Emma.  The MRI showed that Emma had a Mesial Temporal Schlerosis on the left hippocampus of her brain.  Her mother was told that in 6 months, if it had grown, Emma would need to have surgery to remove it. 

Emma was put on a new medication to try to control her seizures.  It seemed to work at first but after a couple of weeks, it seemed to stop.  The dose was increased and she seemed fine until it stopped working after another 2 weeks.  At this point Emma had a hard time remembering anything.  She seemed to have complete memory loss some times and would often forget where she was.  There were even times when she didn't know who her mom was.  Emma's mom talked to her neurologist who told her that it is normal with her seizures and not to worry.  At that point, Emma's mom took matters into her own hands.  After reading the side effects of the meds and seeing that all of Emma's symptoms seemed to be the side effects, she called her pediatrician and went in to discuss neurologists.  She also contacted the Epilepsy Foundation in her area who helped her find a new neurologist. 

The new neurologist performed another EEG and discussed medications and possible other treatment for Emma if those don't work for her.  She was slowly weaned off of her other medication and put onto a new one.  the changes in Emma were almost immediate.  She went from having 50 seizures a day and right before Christmas, she was not having any.  Her mother was very happy but yet she still knew something was not right with Emma.  After seeing her neurologist, she was sent to a different doctor who diagnosed her with Atypical Autism and Hypotonia.  She also started physical therapy because of her feet and would soon be walking, jumping and running just like all of the other kids. 

Emma had switched medications once again, had another EEG and another MRI.  This time, the MRI was clean.  Her mom broke into tears.  How could it be clean?  She was told that there was a growth and even discussed surgery.  The new doctor explained that some children's brains do not finish growing until they are 5 and MRI's can often be read wrong.  This was fantastic news for Emma and her family!!!

This past August, Emma started school and is doing outstanding.  She is at the same grade level as the rest of the kids.  She has been seizure free for the past 2 months.  Since she is so young, her mom doesn't notice kids treating her any different and she prays every day that it doesn't change.  The past year has been very difficult on Emma's mom yet she feels this whole experience has made her grow and changed her into a better person.  What her mother fears most is SUDEP (sudden unexplained death in Epilepsy) and would sometimes only get 2 hours of sleep a night being at Emma's bedside.  Luckily Emma doesn't understand fully what is going on.  She knows she has seizures and that she has to take medicine to help control them but that is about it.  One day she will understand Epilepsy more and will not want people to define her strictly by that.

Thank you so much Emma's mom for sharing Emma's story with all of us!!!  If anyone has any questions about Epilepsy or SUDEP, you can learn more at http://www.dannydid.org/ or through your local Epilepsy Foundation. 

 Let's let kids like Emma know that they are beautiful and loved, every kid deserves to feel special!!!

Cassidy

The month of November is Epilepsy Awareness Month.  For each day of the month I am hoping to profile the many faces of Epilepsy.  While this may not help find a cure, I am hoping it will get the word out that there are people living with Epilepsy and unfortunately, Epilepsy has taken loved ones far too soon.  Please read each story, look at their face and help spread awareness.

Cassidy

This is Cassidy.  She is 9 years old and is currently in the fourth grade.  She enjoys singing, dancing, reading and playing with her friends and sisters.  At the age of 7, Cassidy had her first Grand Mal seizure.  She was up early, ready for her first plane ride with her Grandma to visit family.  She was sitting on her mothers lap when her mother noticed a "weird noise" and her body stiffening up.  She asked if she was ok before noticing her lips were blue and her eyes were half rolled back in her head.  Within seconds her mother knew she was not breathing and as she shouted for help, Cassidy started shaking uncontrollably.  The seizure lasted for 3 minutes and she remained unresponsive for 30 minutes after.  After being taken by ambulance to a local Children's hospital and numerous tests later, she was diagnosed with Epilepsy.

Cassidy had a hard time after being diagnosed.  Her medication she was on was not working completely.  She had seizures at school and never felt like she was in control.  She was bullied at school and found ti hard to ignore the snickers and jeers from the other kids.  Within a year her medications were finally able to stabilize her and help control her seizures.  She has made some great friends who stick up for her when she needs it.

If you ask Cassidy about her epilepsy, she will tell you all you want to know.  She is not ashamed by it and wishes that everyone would treat her and others like her like normal kids.  Being left out o hurts, especially when her Epilepsy keeps her form doing some things the other kids can already do.  Cassidy loves being able to go out and spread awareness.  She has volunteered for The Danny Did Foundation and The Epilepsy Foundation of Greater Los Angeles. 

Cassidy is a child living with Epilepsy.  Please help spread awareness that Epilepsy is real and needs to be talked about!!!!