Super Chicks: The Story of Tali and Stella

A few weeks ago I had the opportunity to catch the tail end of the National Epilepsy Walk in Washington, D.C. I had hoped to be there from the beginning, but having shot a Bat Mitzvah the night before, I was moving a little slowly Sunday morning. My wife, kids and I all put on our warm coats and went into downtown DC where I found rock star parking and met up with my friend Liz and many other families who are affected by this devastating disease. I hope you’ll take a few minutes to look at the photographs and read the stories of Stella and Tali, two sweet little girls who just happen to be the daughters of very good friends.

This is Liz. We’ve been good friends for over 20 years. Now she lives in New Orleans with her husband Warren, their two sons, Ike and Sam, and their daughter, Stella.

This is Stella. Isn’t she gorgeous?

This is Stella’s story as told by Liz:

Before my child got sick, I knew nothing about epilepsy. This is quite sad, considering that I was a Special Education teacher and had several children who dealt with seizures come through my classroom. I did not know that several women I have always respected have battled epilepsy for years. I did not understand the struggles a good friend faces, every day, because his child has epilepsy. For whatever reason, this disorder is not often discussed. I believe, or hope, that there is a cure in the near future. I also believe that if this disorder were more openly discussed, a cure would come sooner. My daughter, Stella, has Doose Syndrome, also known as Myoclonic Astatic Epilepsy. Her first seizure was on March 24, 2009, and was accompanied by a fever. We were told not to worry – it happens all the time. She had just turned 3. By the beginning of May she had had hundreds of seizures. We had tried 9 anti-epileptic drugs, all of which failed her. There is no way to describe the fear and heartbreak a parent feels when watching their child seize. The paralyzing horror of realizing that I could not help my child, that there really are such things as monsters and I couldn’t keep her safe from them, has changed something deep inside of me. In less than 10 weeks Stella lost her ability to talk, sit up and walk. The doctors here in New Orleans were at a loss, and began to look at several neurodegenerative and terminal diseases. We were told to take her home and wait if we thought we could handle it. We were only home a few days before Stella lost her ability to swallow and we had to return to the hospital. Stella was given an emergency IV dose of a very potent steroid, Solumedrol, over the next 5 days. She began to improve immediately. On the fifth and final day of the steroid treatment we flew her from New Orleans to Chicago to see Dr. Douglas Nordli, or as I like to call him ‘The Greatest Man on Earth’. Dr. Nordli diagnosed her with Doose and told us that her condition had escalated at such an alarming rate because she, like many other Doosie Goosies, was having paradoxical seizures due to the anti-epileptic drugs that she was taking. He suggested that Stella be admitted into the hospital in Chicago in order to initiate the Ketogenic Diet. We jumped at the opportunity. Once Stella was safely in ketosis, we began the long, slow process of weaning the many medicines she was taking at that time. Stella is currently both seizure and medication free. She is still on the Ketogenic Diet. The strength and spirit of this little girl knows no bounds. She is walking, talking, running and spending an incredible amount of time in ‘time-out’. We are a very fortunate. We are in the process of healing. Epilepsy is a family affair. Please help us spread awareness about this disorder that effects so many.

Warren and Liz Chapaton with their kids Ike, Sam and Stella

When the doctors in New Orleans were struggling to help Stella, Liz called KP, one of my oldest and closest friends. He lives in Massachusetts with his wife Gayla and their daughter Tali. There are many catastrophic forms of childhood Epilepsy. Stella has Doose Syndrome and Tali has another called Dravet Syndrome. The odds of having two old friends with children having such rare Epilepsy conditions is staggering. Last summer I spent a few days with KP, Gayla and Tali and took some family photos. Because too much light can cause seizures in some Dravet patients, Tali’s home is kept very dark. These photos were taken in extremely low light with no flash. Look at that sweet smile…melts my heart every time.

Here is Tali’s story as told by her mom, Gayla:

Tali is a bright, playful, and mischievous four year old, who likes to make up silly lyrics to familiar songs, do somersaults, and gather the family for “family hug”.

While this is all very typical of a young child, Tali is anything but typical. Tali suffers from a rare and catastrophic seizure disorder called Dravet syndrome. Her first seizure came when she was 9 months old. The seizures were relatively infrequent at first, and the doctors tried to reassure us that they were most likely nothing to worry about. As happens with most children with Dravet syndrome, however, the seizures became more frequent as the months passed, and new seizure types developed. Tali has not had a seizure-free day since she was 16 months old.

Tali, like some children with Dravet Syndrome, is extremely sensitive to light and other environmental stimulation. While darkness does not necessarily keep the seizures at bay, bright light will certainly exacerbate them. As a result, Tali stays in the house almost every day, with blackout curtains over all of the windows and only one or two very dim lights to see by. She has very limited social opportunities with other children.

Tali’s most frequent seizures are brief atypical absences, during which she pauses unexpectedly, often with her eyes darting off to the side as if she was given a small electric jolt from within. She can have dozens of these in a day. Less frequently – anywhere from once a week to three times a day – Tali will have a larger seizure. Some of these last several minutes and include twitching of the muscles in her face and stiffening of her body or convulsions. Others are prolonged, “status” seizures. The status seizures do not stop without intervention using potent medications, and usually involve a call to 911 and a trip by ambulance to the Emergency Department. For Tali, status seizures have lasted as long as an hour. Due to their length and severity, these seizures present a serious risk of brain damage or even death. Tali averages one status seizure a month, and is by now very well known to the area’s emergency response personnel, many of whom the family knows by name.

Although Tali is currently taking three different anti-seizure medications, and has tried numerous others, her seizures are not well controlled. Dravet Syndrome is notoriously resistant to medication, and the effects of a single medication vary greatly from child to child. Some children do find combinations that help, however, and so we will continue to experiment with available medications in the hopes that something will work for Tali. Tali also takes various other medications and supplements to counteract the side effects of her primary seizure medicines. In all, she takes 13 doses of medication and supplements each day.

Although we try our best to provide Tali as normal a childhood as possible, between the darkness, seizures, and medication regimen, her days are anything but normal. The seizures can strike at any time, and so we live in a state of hyper-vigilance. Someone always watches her. A hospital bag is always packed and ready near the door, records and notes are updated daily, cell phones must stay charged, and after each big seizure, emergency medication caches around the house are checked and restocked.

Despite everything, Tali is full of joy and humor, and inspires us to do everything we can to keep her safe and happy.

 

Thanks for taking the time to read about Stella and Tali. If you are interested in learning more about Doose Syndrome and Dravet Syndrome, or would like to make a donation please click on the following links:
www.dravetfoundation.org
www.chelseahutchinsonfoundation.org

More photos from the National Epilepsy Walk can be found here:

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