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October 26, 2015

Capes that Care ›  



Meet Shalee Cunneen

Capes that Care for National Epilepsy Awareness

 November is the National Epilepsy Awareness Month and we're wondering how much people really know about Epilepsy.  To be honest, 5 years ago, we knew very little about it.  Today, however, we know a ton more thanks in part to our close friend Shalee and her daughter Ella.  We have learned that 1 in 26 Americans will develop epilepsy in their lifetime. 200,000 people are diagnosed with it each year worldwide and for more than half of them the cause is unknown.  Approximately 66% will find a way to control seizures (most frequently with side-effects) and 34% will not find a way to control them.  We found these statistics overwhelmingly unfair especially if you can imagine having seizures, now knowing why and not knowing if you'll ever find a cure for them!  During the past 5 years, we also have learned that people suffering from epilepsy, whether having the condition or assisting someone who does, are truly amazing, resilient and selfless HEROES.   We also have seen that despite the lack of answers about their condition they figure out how to carry on and can live great, meaningful and happy lives, especially if they have support from family, friends and community who CARE.

          This month’s Capes that Care initiative is dedicated to Shalee Cunneen whose 6 year old daughter Ella has been suffering from epilepsy for the past 5 years.  Ella, who had her first seizure the day after her first birthday, has undergone countless tests, therapies, drug trials and even a special diet in efforts to stop her seizures.  Her doctors have tried to locate the area responsible for the seizures in hopes to surgically control them but still to no avail.  Ella has been seizing every 3 to 4 days which has caused her to have severe developmental delays.  Amazingly enough, Ella is an extraordinary trooper as her spirit is unbroken and her smile is as contagious as they get.  Similarly, although we’ve seen Shalee concerned or sleep deprived at times, she always has seemed ready to rise to any challenge coming her way and has become one of the toughest, most resilient moms and supporters of all epilepsy-related initiatives and research.  Shalee is a rock for Ella and her entire family and has inspired so many others through her dedication and hard work for her family and this cause.

 

Meet Shalee Cunneen in our short interview:

SAMIMAY:  You and Ella share a special bond which you can see in your interactions and even in pictures.  What do you admire the most about your daughter?

Shalee:  Everything!  She really is my inspiration and a constant reminder not to sweat the small stuff.  She is the sweetest and most brave little girl I have ever met.  She endures so much, yet still has a smile that can light up a room.  I love that we get into elevators where everyone is staring at the wall, and then Ella starts telling everyone “Hi! Hi! How are you?", and she keeps on going until people respond.  It really makes people smile and I just love how much joy she brings everyone.  She loves going to the doctor and having her vitals taken, and she offers her arm up for blood draws and isn’t scared one bit.  Afterward she always looks at me and says “brave.”  She is so much braver than any child should ever have to be, and that breaks my heart, but at the same time I am so incredibly proud of her and so lucky to be her mom. 

SAMIMAY:  What is the biggest challenge for you as you're supporting your daughter Ella in her fight with epilepsy?

Shalee: There are many challenges that we face daily however the biggest is not being able to stop her seizures. It is so hard to be so helpless and just watch her go through this.  Her seizures typically last 20 minutes, and it never gets easier to see one.  I also don’t know how she feels from all the medications she takes, as there are so many side effects with each drug. She cannot always communicate effectively how she feels, so she will often say “knee hurts” or “boo-boo” as those are phrases she hears from us, asking her if her knee hurts after a fall or if she has a boo-boo.  It is heartbreaking to be doing everything I can to help her, but that not being enough.  It is also hard to see Ella so developmentally behind her peers and the unknown fear of what's ahead for her and us.  We continue to take her to top-notch hospitals and participate in new drug trials, hoping one day for a cure. 

SAMIMAY:  What would you like others to know about epilepsy?
Shalee:  Epilepsy can affect anyone, at any time.  It does not discriminate at all, and there are so many types of epilepsy that affect people.  We didn’t know much about epilepsy when Ella was diagnosed…for example I didn’t know that it could cause severe developmental delays or that people often die from it.  I try to not read stuff on the internet, unless it’s from a very reliable source that Ella’s neurologist has confirmed. I also think it’s important for people to know what to do and not to do when they see someone having a seizure…for example you never put something in someone’s mouth while they are seizing, and you should always lay them on their side and time the seizure.  Epilepsy is not talked about as much as other conditions, and I think this is such a great way to raise awareness! 

SAMIMAY:  Did Ella's epilepsy change you or the way you view life?

Shalee:  Very much so.  My husband and I try our hardest to always remember what is important, and to just live in the moment and enjoy every minute with Ella, and our son Sean.  We try to focus on everything Ella can do, and not what she cannot, or may not be able to do.  All parents understand the worry that comes along with being a parent, but epilepsy takes it to a whole new level.  Ella’s seizures could happen at any time, and therefore she is never left unattended, especially when she sleeps.  When we take a vacation, we always make sure we know where the nearest hospital is, and we only travel places in the US where there are large, reputable hospitals.  It can be hard at times to see others living more care-free lives, however we do what we can and focus on the positives.  Ella is very lucky in that she enjoys life and can still participate in many activities that a lot of kiddos with epilepsy cannot.  Ella loves playing outside with her brother, swimming and she loves the characters and rides at Disney world. We try very hard to not let epilepsy control our lives, however sometimes it just does and we have to be ok with that.  We are also lucky that Ella has a very understanding and loving little brother.  We are optimistic that future discoveries will lead Ella to a seizure-free life but until then we will enjoy what we have!  She is truly an inspiration to us all! 

 

 

We are honored to feature Shalee on our blog, and as a thank you for all she does we’ve sent her one the capes that she picked.  Because #EveryHeroNeedsaCape.  Additionally, in order to commemorate the National Epilepsy Month, we will donate 50% of our online sales to CURE – Citizens United for Research in Epilepsy.  This organization has been doing a number of amazing research projects enlightening the world about the complexities of our brain and specifically how to control different types of seizures.  To learn more about CURE please click link here.

 

 

Thank YOU for reading!  Thank you for considering making a donation!  Through November 26th, SAMIMAY will donate 50% of all online revenue to CURE to help find a cure for Ella.  
 
We humbly ask everyone for prayers for Ella, Shalee, their whole family, and team of doctors and nurses that work with them.

 

To learn more about epilepsy and related inspiriting stories, please see the below links:

http://www.cureepilepsy.org/aboutepilepsy/what_is_epilepsy.asp

http://bit.ly/InspiringStoryaboutSavannahandherMom

 

Thank you,

SAMIMAY Team