Dravet Quilt of Celebration

Dr. Brenda Young Ferrell, Ph.D.

Who Am I?

My name is Dr. Brenda Young Ferrell, Ph.D. (French), mother to Dravet child, Brian T. Ferrell, age 15! I was a university professor of French and ESL Methodology in the Graduate program at Carson-Newman College, a small Southern Baptist University in East Tennessee. However, when my son was born, and began having seizures at age 4 months, my nightmare roller coaster ride with epilepsy began. I was finishing the graduate work for my Ph.D., teaching full-time, and “living” in the Pediatric Intensive Care Unit at East Tennessee Children’s Hospital praying and fighting for my son’s life as he had 45-minute to one and a half hour long seizures.

When Brian was one year old, I took him to Paris to see Dr. Olivier DULAC, a colleague of Dr. Charlotte DRAVET. Dr. DULAC told me then that Brian had SMEI (Severe Myoclonic Epilepsy in Infancy), that he would develop normally until age six, and then stop and might even regress. I sat in his office and cried. When we returned to Tennessee, I took Brian to the University of Tennessee Developmental and Genetic Center to be tested. I wanted to have a baseline of his cognitive abilities to compare to as he aged. Unfortunately, Dr. DULAC’s prognosis has come true. I have done everything that I could to help Brian to learn. I sometimes tried to “force” him to learn because I wanted so badly for him to be “normal.”
How many times have I cried after going to his school and seeing the gap between him and his peers increase?

How many times have I cried because the myoclonic jerks would not stop? How many times have I cried because I felt like Brian was a guinea pig for one more anti-convulsant drug? “Let’s try it and see,” said his neurologist. What about the time his doctor said to put him in the hospital, take him off all his meds, hook him up to an EEG monitor and video, and wait for him to have a seizure in the hospital. I cried about that, too. I’ve been in counseling for years, sometimes I’ve even had Brian in counseling. We tried the ketogenic diet for 18 months. Brian ended up with gastro-intestinal problems. I was a basket case trying to force him to eat the specific foods on his plate. I ended up calling the gastroenterologist screaming and hollering at him over the telephone because my child would not eat the “medicine” that the diet was supposed to be. I called it the “diet from hell.” It did work for one thing, it stopped the myoclonic jerks, but we were never able to completely get off of all his meds and only use the diet.

In December 1994, I decided to have Brian’s tonsils out in order to hopefully, reduce the number of sinus infections and respiratory problems that he had been having. Unfortunately, we almost lost him. Even though we stayed in the hospital overnight, it was the medicine I tried to give him the next day with a syringe that caused the problem. Brian aspirated and began seizing. We returned to the hospital in an ambulance, where I was told on December 25, Christmas Day, that he had ARDS (Adult Respiratory Distress Syndrome), and had a 50/50 chance of making it. We spent the next 14 days on a respirator in Pediatric ICU, literally fighting for his life. God blessed us with more time on this Earth, and because of this experience, Brian’s dad, Tom, began doing research in a whole new field. This research will benefit many people in the future, doctors, patients, military personnel, even baby zoo animals! I quit asking “why”, and just accepted that God had given us this special child, so that Tom’s research might benefit others.

Over the years, Brian has been in status epilepticus more than twelve times. Because of the severity, duration, and number of seizures that Brian has had over the years, there has been brain damage. However, the numerous medications that he has been on over the years, and the side-effects of these drugs have also impacted him. I finally had to quit my job in 2000, in order to be a full-time mom and to be more available for Brian when he had a seizure at school. I then became active in the school PTA, Cub Scouts, Boy Scouts, and Church. Last fall, I returned to teaching part-time, but this time at the elementary school level as an ESL teacher. This allows me the time to take Brian to doctor’s appointments, and to be free to go to his school when necessary.

For the seven years when I was not teaching, I indulged in one of my favorite hobbies, tennis. I also developed a new hobby, quilting. The first year, I made 36 quilts. I’m kind of compulsive and jump into everything I do completely and whole-heartedly. I have an artist friend, Karen Bailey-Earith, who has also been a physical therapist and has worked with special needs students over the years. About ten years ago, she made a “Down’s Syndrome” Quilt. I saw it last fall at a Disabilities Resource Fair. It was awesome. I’ve been thinking about doing something similar for some time. I would love to make such a quilt for the IDEA League, the organization of parents and professionals who are committed to finding a cure for Dravet’s Syndrome, this rare form of epilepsy that Brian has. Only 1 in 40,000 people have this rare disease. Unfortunately, the prognosis is not good with only 82% or less living to adulthood.

The road of a Dravet family is not an easy one. It is not a road we chose to travel, yet it is one we have to travel because we love our kids and we will do anything for them. Because Brian is older now and because his seizures are under much better control, I have more time to volunteer, and my quilting is one way that I hope to be able to help the IDEA League and our awesome kids.

Written by Dr. Brenda Young Ferrell, Ph.D.