Volunteer Spotlight: Jamie Bacigalupo

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Jamie is an eight year old girl who was diagnosed with Benign Rolandic Epilepsy at age five.  She is on a mission to bring awareness about epilepsy and to bring smiles to children hospitalized.
 
By Jamie Bacigalupo, 8
Three year's ago, I had a seizure for the first time.  I don't remember much of what happened but I was told that I was making a weird noise, the left side of my face was twitching, I couldn't wake up and I drooled a lot.  My mom and older sister were really scared and took me to the hospital once it stopped.  I had many hospital visits, doctor visits and medical tests to find out what was wrong with me.  All those tests were scary and sometimes, they hurt.  It was a hard time for me because I was also starting school for the first time and was still adjusting to what is called Benign Rolandic Epilepsy (BRE).  BRE is a form of epilepsy that causes seizures to affect the face and sometimes the body.  Most cases of BRE start around age six to eight but will disappear through age.  My seizures originate in the rolandic area of the brain which controls the face and are called partial seizures.  No one knows what causes BRE and sometimes BRE causes other problems such as the spreading of seizures to the rest of the brain, learning and behavioral issues.  I also found out that I have migraines and pediatric insomnia both possibly due to my epilepsy so all together, I take two medications daily to stop the seizures and migraines.
 
During one of my stays at the hospital, I had a 48 hour test that records electrical activity along the scalp produced by the firing of neurons within the brain known as electroencephalography (EEG).  A group from a local church delivered a gift bag of candy, snacks, small games and a gift card to the children hospitalized.  My mom and I spent the night laughing, playing games, taking pictures and had one of the best nights ever. My younger sister also has a chronic medical condition and has frequent hospitalizations.  After my own experiences and knowing what my little sister and mom goes through, a few month's later, I wanted to do something like that church did to help other children hospitalized with epilepsy.  This is where I started Angels4Epilepsy.
 
Angels4Epilepsy, Inc., is a non-profit officially started in November 2010 after winning a Pepsi Refresh grant that helped to fund the idea further.  Last year, gift bags of snacks, toys, stuffed animals and more were delivered to over 100 children hospitalized in Georgia and Florida.  We dropped off 20 bags to the local Ronald McDonald House and donated food to the local food bank to help other children in the community.  March 26th is an international celebration called Purple Day (http://www.purpleday.org/) that recognizes the need for more awareness about epilepsy and the effect epilepsy has on the millions of people affected around the world.  Angels4Epilepsy delivered 18 purple bags and purple Pillow Pets to the local children's hospital to increase the awareness of epilepsy in our community this past Purple Day.
 
My diagnosis has changed my life and my family's because we all participate in the planning, preparation and delivery for Angels4Epilepsy.  I have had others from various epilepsy organizations in two states also help in delivering gift bags to children because they liked my idea and wanted to help children in their area.  The Epilepsy Foundation states that each year, 45,000 children under the age of 15 develop epilepsy each year.  They also state that an estimated 3 million people in the United States have epilepsy.  Not many people know what epilepsy really is and they do not know how hard it can be to have it.  I'm hoping that with Angels4Epilepsy, people will learn more about it and will try to help others understand it.
 
Being able to provide happiness to what can be a scary experience is what makes me want to continue to grow Angels4Epilepsy.   To know that I can bring smiles to other children makes me want to do more.  Last year, I received a letter from a nurse telling me how a mother cried when she plugged in the tiny Christmas tree included in the gift bags.  I don't stop and ask my mom why I was chosen to have epilepsy.  I do know that doing things for others is something that makes me feel good and knowing that I can bring a smile or happiness to someone else, is nice. 
 
To learn more about Angels4Epilepsy or to help, please visit us at www.angels4epilepsy.org or contact your local Epilepsy Foundation (http://www.epilepsyfoundation.org/).
 
Thanks so much for sharing your story Jamie. Check back tomorrow, we'll feature Katherine Commale who's raised over $180,000 for Nothing But Nets, and make sure to let us know how you help your community at editorial@discoverygirls.com!