The Color Purple



Purple Day is March 26th - Wear your purple to support epilepsy awareness globally.

Epilepsy. To some people, it is just a word. It is a disorder that doesn't apply to them. It is a condition that doesn't affect any of their loved ones. Having had an adopted cousin who was diagnosed in the '80's with the condition, I was "familiar" with Epilepsy, but not really "aware". I knew it was difficult on my Aunt (and still is), not just because of the epilepsy but, because my cousin was a special needs child and had a myriad of other conditions as well. That made getting her meds just right a bit tricky. My cousin is now in her 20's and hasn't had a seizure in years but it is something that is always in the back of my Aunt's mind and she doesn't rest easy. My cousin would be unable to alert my Aunt to any of the warning signs and most likely, would not even recognize that they even were warning signs. 

DID YOU KNOW

Epilepsy affects approximately 1 in 100 people.              

There are approximately 3 million Americans living with epilepsy.

There are approximately 50 million people around the world living with epilepsy.

Epilepsy is NOT contagious.

Epilepsy can occur for the first time at any time, including during old age.

Epilepsy can be fatal (SUDEP)

Want to know more about epilepsy? Visit http://www.epilepsyadvocate.com/



Become a member of the Epilepsy Advocate Program and receive:

  • Monthly emails with tips and support for people with epilepsy and their family, friends, and caregivers

  • Free issues of EpilepsyAdvocate magazine



Fast foward to 2010. After losing touch with each other for a very long time, I reconnected with a cousin who was a part of my life during my childhood. I'm not sure how it is with other people, but the older I get, the more sentimental I seem to be. I was thrilled to have found her and was touched with how receptive she was to renewing our relationship. I feel very blessed to have her in my life, even if we do live too many miles apart. 


During this time is when I really became "aware" of epilepsy. 





                                                
Jamie


My cousin's daughter, Jamie, was diagnosed with epilepsy when she was 5 years old. It was a scary time for them. When Jamie was visited in the hospital and given gifts and snacks, the idea to help other kids sprang to life, and Angels4Epilepsy was begun.




Angels4Epilepsy is Jamie’s project, in which she aims to help other kids with epilepsy to feel more at home when they stay in the hospital. From packing up gift bags to delivering those gift bags, filled with all kinds of goodies, Jamie stays busy comforting those who are going through the same thing she’s going through. Angels4Epilepsy aims to comfort children suffering from epilepsy, but it also aims to educate the community about this condition. Each major holiday will find Jamie delivering the gift bags to the local children’s hospital, but she also wants other children to get involved too.



About the same time my cousin and I were getting reacquainted, Jamie was trying to win a $5000 Pepsi Refresh grant. It was absolutely amazing how friends and family, and total strangers, came together to help Jamie reach this goal. 




Jamie holding the first disbursement from Pepsi




is now an official non-profit organization and has already made deliveries to a local Ronald McDonald House, a food pantry,  and hospitals in GA, IN, and FL. 






To make a donation, to learn more about Jamie's mission to help other kids, or to learn more about epilepsy, visit www.angels4epilepsy.org.


Jamie is a kid with a mission and is as sweet as they come. I know my cousin would rather I leave her out of this (SORRY JUDY), but that just isn't possible. Why? Because Judy does not let epilepsy define Jamie. She never tells Jamie that she can't do something because of her epilepsy. Epilepsy is a part of who Jamie is, but it does not own her. It would be so easy for Judy to be overwhelmed by everything and just throw in the towel. Being a military wife with a deployed husband is hard. Being a mother with not one, but two children dealing with chronic medical conditions is even harder. Add them both together, and you have one stressful situation. Judy leads by example and because Jamie sees her mother persevering, she follows suit. It never occurs to her that there might be something she is unable to do. Nothing is impossible for her. Nothing is out of reach. Her mother has given her the gift to believe in herself. To my cousin, and her daughter: I admire you and love you both. I thank you for making me AWARE of epilepsy. I thank you for helping me want to get involved and to make others aware. 





While we try to teach our children all about life,
Our children teach us what life is all about.
~Angela Schwindt

2 comments:

YouthfulTips said...

Talk about being sentimental! That was so touching and it made me tear up! I'm a sensitive one and that touched me deeply. Thank you, Ruthie and your family for all your support both with Jamie, her project but for reconnecting and being a part of our lives! God is wonderful and I'm thankful for us being brought back together!

We love you and admire you too! You are a dynamo mom to five!

YouthfulTips said...
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