Rainia's Legacy

We lost her. We lost Rainia. On Friday January 14, 2011, we lost Rainia.

Rainia was my niece. She was 17-years-old and had the kind of chameleon-like eyes that you rarely see; her eyes seemed to copy whatever color clothing she wore. I used to say that her eyes were a virtual palette of colors; sometimes blue, green, gray, and sometimes even violet. Tall and beautiful, she was, with long light brown hair. She was a straight “A” student until she was about 8 or 9 years old. By then the effects of medication combined with the effects of her lifelong medical condition had begun to take their toll, and she was no longer able to remain a mainstream student.  You see Rainia was an epileptic. She had been having seizures since she was 9 months old. Sometimes she’d experience more than 20 in one day.

 Five years ago we were told about a device called a Vagus Nerve Stimulator. Supposedly this tool could not stop the seizures, but it had the power to not only cut down on the number of seizures that Rainia had in the course of a day, it also was suppose to lessen the severity of them.  We were told that the VNS, a rather small object, would be placed in her chest and wired to her brain. The surgery to insert the device would take a couple of hours, Rainia would be hospitalized for several days for monitoring and then she’d be released. Also, after 5 years she would need to come into the hospital as an outpatient to have the device adjusted because of her advanced age and weight.

We could hardly wait! We thought that once the surgery was performed, surely her worse days were behind her. After many weeks during which rigorous screening was done, finally the big day arrived; they inserted the VNS.

It didn’t take long for us to realize that the surgery made little difference. Rainia continued to have almost as many seizures, and nearly on a daily basis, as she had before. Also, the severity of them did not ease up.

Still, she endured. Actually, she did more than endure. She lived! While it’s true that she lagged mentally, in that she was very childlike, (more like a 12 or 13 year-old), and had to attend “special classes”, by the time she reached high school, she did attend a regular school. She had to wear a helmet for protection and she was escorted to and from each class, first by her loving older brother, and later by her friends. She loved to watch movies, was crazy about the color purple, and she had an afterschool job in a beauty salon that she was very proud of. She participated in studies for people who are afflicted with epilepsy, and she went to camp at Camp Blackhawk for kids like herself for two weeks every summer since she was 12. In October of 2010, she traveled to Effingham Illinois to attend the Statewide Transitional Conference for Special Needs Youth, which spanned three days. She spoke on epilepsy at the conference and participated in a documentary, wrapping it up by recording a video with her mom, my sister Carol.

On January 13, 2011, it was time to adjust the VNS. She had it done on an outpatient basis as planned, and she was later sent home.

She passed away the next morning.

My sister firmly believes in organ donation. People in need will benefit through the donation of some of Rainia’s organs. The Rainia Holmes Scholarship Foundation was  established in January of 2011, and several scholarships have been awarded to deserving students in Rania's name.

She lives on.