No Tears

It’s a good day in Redwood City, California, home to the San Francisco 49’s training camp, The Museum of Pez Memorabilia and a small girl who plays (or tries to play) in the driveway with her sisters. Wisps of Kinsley’s hair give way to the crisp breeze. Her shoe laces flail wildly about her sneakers. She moves enthusiastically but not too fast.

Kinsley follows her sister, Kolby, and step sister, Mikayla, around the gravel driveway as they kick a soccer ball into imaginary goals. Her lack of coordination, however, makes it impossible for her to keep up. As the ball bounces from one foot to the next, she fumbles from one step then another. It is not in her nature to quit. Every five or so steps, she must stop and regain composure with her sister Kolby at her side. Since the rise her daily seizures, Kinsley is never unsupervised.

Never the less, Kinsley’s sister Mikayla recognizes the effort and sends an easy pass her way. The ball meanders, slowly, to her feet. Her eyes light up for a moment, and she violently attempts to whip her leg straight at the ball. She skims the side of the ball’s worn leather, sending it sputtering to the left. Once her kicking foot lands, she loses her balance. Both knees fold towards the ground. The loose pebbles in the gravel driveway rip open her skin, and a line of blood trails down her left leg.

The moment comes and passes. Her sisters help her up and usher her into the house. Seemingly unphased, Kinsley walks, shakily, in between them. Once inside, her sisters run back outside as she silently heads for her mother. Genée smiles initially but soon spots the blood and asks Kinsley what has happened. Kinsley registers no emotion: no grimace, no moan, no tear, just a distant, impenetrable silence. Genée wipes up the blood and mentally adds the incident to the list of Kinsley’s unexplainable tendencies that come with her Progressive Myoclonic Petite Mal Epilepsy. Although any mother wants to shelter her children from pain, the lack of visible pain or anguish at moments of injury makes Genée long for a time when the only thing needed to restore her daughter to health was to wash a cut, put on a band-aid and give soothing hugs and kisses. Those times are mere memories now. Genée’s motherly healing can only extend to holding Kinsley’s shaking hand during her 30-second sense-numbing seizures that now grip her body between nine and twelve times a day.

Kinsley has not cried in over five years.

The knee scrape doesn’t faze Genée, but the lack of tears troubles her heart.
“When your daughter does not cry for this long; something is terribly wrong,” Genée explains. Will any treatment ever restore Kinsley to a child who can cry when it’s appropriate to cry?

Will It Work?

Kinsley lay still on the white hospital bed sheets. The spot light sizzled at the top layer of skin as she morbidly rested on the operation table. A blue sheet covered her entire body with the exception of two square sections above both her temples. These sections of her skull outlined two areas that the surgeon opened so that he could extract brain cells. All the while Kinsley lay still, knocked out by anesthesia.

The Stanford Medical Center examined pieces of Kinsley’s brain to determine if an auto-immune disease was attacking her brain. They theorized that white blood cells attacking Kinsley’s brain had precipitated her digression from a stable child living with epilepsy to one unable to respond to simple questions. Both biopsied areas failed to confirm their hunch.

When that theory fizzled and Kinsley continued to struggle with petite mal epilepsy (a form of 5-60 second epileptic seizures) and cognitive decline, her physicians decided to try something different: steroids. She was put on her first set of steroids on February 18th, 2009 and once again on March 25th, 2009. At the start of each cycle, the old Kinsley returned. She could communicate and participate in activities like coloring and reading at school. In fact, Kinsley became the second child at her school to read in the principles reading chair which stands as a very big honor. However, this glimmer of recovery was just that, a glimmer.

With each administration of the steroids Kinsley and her family enjoyed only a week or so of the former Kinsley before she drifted back into isolation. On May 11,th Kinsley dove back into a third cycle of steroids in an effort to tackle what plagues her jumbled nervous system. The procedure lasted over three days, requiring four to five hours of intravenous treatment each day. The upside for this third cycle is small according to Genée, Kinsley‘s mother. Although the second cycle of steroids temporarily “awakened” Kinsley, it impaired her ability to sleep and also produced an allergic reaction in the form of a rash all over her body. Genée sometimes feels that her daughter is being experimented upon rather than treated.

This next cycle of steroids will most likely be Kinsley’s last. If it fails to produce dramatic results, Genée and the neurologist may look into a drug called L Dopa, a drug made famous in Oliver Sacks book, Awakenings, and the film of the same name starring Robin Williams. L Dopa produces dopamine in the brain and causes certain parts of the brain associated with Parkinson’s disease. In the six years of her illness, Kinsley has tried one treatment after another, but nothing has reversed the overall decline. Those close to her grasp tightly any hope they find.

In Her Mother's Words

Epilepsy: A Neurological Disorder from B & G Clubs of the Peninsula on Vimeo.

This Video is courtesy of Denise Padilla.