A Morning With Kinsley

Yesterday’s toys lie scattered about the house, and Genée resigns herself to the clutter. She knows that her thirteen-year-old daughter, Kinsley, needs her attention more than any household chore. At seven in the morning, warmly clothed in Disney patterned P.J.’s, Kinsley trails behind her mother through the clutter of toys and clothes. Every few seconds, Genée looks back at her little shadow, takes a deep breadth and heads into the kitchen. When Kinsley’s bare feet hit the cold kitchen tile, she moves to the table, sits and waits.

She stares blankly at her mother’s movements to and from the cereal cabinet, and her mouth opens slightly as if reaching for a sentence to begin a conversation, but she utters no sound. Involuntarily, her head, like a lightly touched bobble-head figurine, swings from side to side. Soon her hands and arms wiggle gently. She remains seated, her sole voluntary act, while tremors take over her body.

As her mother approaches the table with a bowl of Cheerios, Kinsley keeps her eyes on her mother’s face. She stares, transfixed and glossy-eyed. Genée dips her spoon in the cereal and “Oh”s as she airplanes it into Kinsley’s mouth. Kinsley almost forgets to chew her Cheerios. She has forgotten how to do most ordinary activities she once performed with ease. Although diagnosed as slightly overweight in the past, Kinsley has lost about a pound a week for the last seven months. As her mother dives back into the bowl, Kinsley still blankly peers at her mother, her body trembles and she awaits the next bite.

The simplest of daily rituals have become complicated and unpredictable with Kinsley. As Genée bathes, dresses, combs Kinsley’s hair and brushes her teeth she speaks nurturing words of encouragement, but on this morning, those words go unanswered. Whether unresponsive or articulate, Genée proceeds with as much normalcy as possible.

Once ready to head off to her school for children with special needs, Kinsley scurries to the family SUV parked in the driveway. She sits upright and buckled so that no matter how bad the shaking gets she won’t fall over. From the cell phone speaker comes the comforting greeting of her grandmother:
“Good morning, how are you Kinsley?”

Staring out the window, Kinsley stammers out a response, “Hi-I-I- Naaana…Good-biie,” her words are a flat operatic vibrato of strain. Even from the land of the lost, a place where a rare and undiagnosed affliction periodically sentences Kinsley, she returns to the comfort of a familiar voice.

An Evening with Kinsley

The sun has set, and the after-work T.V. fires up at the Fonseca house. The time on the cable box reads, 6:01, and the home phone rings. David, Kinsley’s step-dad, picks it up.
“Hello,” he says. “Oh, hey Genée. Is everything ok?”

He listens.

“Uh, oh,” he mumbles. “Did she throw up at the Boys and Girls Club or in the car?” He pauses for a moment. “Ok. Well drive safe,” he tells his fiancé as he hangs up the phone.

Concerned, David settles back into his couch and turns on the baseball game. A call like this floods David’s stomach with an unsettling stir. After months of watching Kinsley’s precipitous decline, nights at the Fonseca house bare little resemblance to earlier days when her condition was manageable, when David could still interact with Kinsley. There is a constant yearning for the fun-loving Kinsley to return.

As the clock on the cable box reads 6:20, head-lights flash through the living room windows and descend upon the outside driveway. Genée arrives with Kinsley and her younger sister Kolby.

The front door swings open, and the night air rushes in. Following the cold breeze comes the frantic energy of Kinsley, pointed toward her mother’s room at the far end of the house. David says hello, “Hello Kinsley,” twice, but she gives no sign of hearing his greeting.

She stops, the puzzled expression on her face freezes, and her muscle tremors maintain their hold on her body. She gazes around the room only to settle momentarily on David. Then at her sister who has made a b-line for their bedroom. Kinsley takes a moment and once again surveys the situation like a nervous cat amongst new people. Nothing registers. After five seconds, the hesitation releases and Kinsley jets to her mother’s room at the far end of the house.

“She is not feeling well tonight. I think she has a fever,” Genée tells David as she enters the house a moment later.

“Alright, well let’s try to get that temperature down,” he replies.

They exchange knowing glances but neither says a word nor appears worried, just tired. After a full day of work, both must now summon the energy to help Kinsley wash, bathe, clothe, eat dinner and eventually fall asleep. Although understanding and caring toward her sister, 11-year-old Kolby must now wait for some attention from her mother.

This nightly scene has become routine except tonight has the extra worry and weight of tending to a sick child.

As the clock reads, 7:08, two Ahi tuna fillets sizzle from the kitchen and plates make delicate thuds on the dinner table in between silver-ware set-ups. Kolby robotically sets the table as David and Genée prepare the dinner. The dining room table sits directly next to Genée’s room so that Kinsley can see from the bed what’s happening at the table.

Peering into the room, Genée notices Kinsley’s calm demeanor and says to herself, “Hopefully her temperature will remain a low grade fever.” Memories of random nights she had to rush Kinsley to the hospital in an ambulance with 106 degree fever, plagues her.

The food hits the plates and as the three settle at the table tonight, a grin hits David’s face and a joke about the San Francisco Giants sputters out. He is a Dodger’s fan. A familiar laugh rumbles from mother and daughter and David winds up for another. Between bites the three unwind and enjoy each other’s company for 45 minutes while Kinsley looks on.

Once the plates are cleared, Genée brings a dinner tray to Kinsley since she is not feeling well and feeds her in bed. No laughing. No smiling. Just feeding. Genée comes back from the room to clean up after dinner-- her face still and her eyes heavy with fatigue. She has reverted to taking care of a 13-year-old toddler…

The clock now reads 9:00 and the energy in the house has evaporated. Exhausted, the family dives into sleep in order to make it through the next day.

Except for Genée.

Around midnight, she falls asleep knowing, that Kinsley will wake up at least three times before sun-rise asking for her. And with that thought, Genée also knows, she will give all the comfort she can.

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.

A Moment in the Middle of the Night

At three in the morning, Kinsley’s mother pulls the oxygen mask from her smiling face. The bed spread lifts from her restless body as she anxiously shuffles to the side of her bed. Her mother, Genée, kneels next to the bed, waiting.

At two minutes past three, 13-year-old Kinsley opens her broad brown eyes to a world she misses dearly: normalcy. Her plump cheeks squish and wrinkle as she smiles and her white teeth with a gap in the front appear as if saying, “Here I am.” Kinsley’s arms widen with affection as mother and daughter meet for a mid-night hug.

Genée’s heart melts.

She knows it will not last. Releasing the hug is difficult for both, but Kinsley cannot hold back her vigor, quickly exploding with conversation while gathering her once beloved books. Inspecting each book and restacking in an organized manner; small ones to large ones. She recites the alphabet, days of the week and answers simple math questions. Her voice is strong, confident and clear. No shakes or muscle tremors plague her energetic body tonight. Her cheerful disposition is undeniable as Genée helps the towering books from tumbling over.
At five minutes past three, Kinsley’s burst of emotion quickly dampens to a desperate look of sadness, exhaustion and the inability to answer any more simple questions. Her eyes become groggy. She slinks back under her covers in bed and returns to sleep.

At six minutes past three, Genée re-applies the oxygen mask, checks the bedside machine and walks down the halls to her own room. On one hand, this interlude with Kinsley felt as joyous as she has had in the past year. On the other hand, it carries with it a certainty that Kinsley has retreated again into a neurological coma, alone and distant. Like an old person with dementia, Kinsley will not remember the interaction in the morning and even if she does, she will be unable to talk to her mother about it.

Kinsley’s condition is rare. So rare, that no doctor who has treated her has ever seen anything like it. She suffers from muscle tremors, aspects of dementia, sleep apnea, short stature, hirsuitism, cognitive loss and chronic seizures. And, sadly, she also suffers from the lack of a cure. With neurological inefficiencies like muscle tremors and an inconsistent system of motor skills plaguing her stout 4 foot 1 frame, it has been impossible for any one physician to place a concise diagnosis on Kinsley. Therefore, she has been given a broad, uneventful one; Progressive Myclonus Epilepsy.

In the world of medical jargon, this means her greatest deficiency appears to be an intense type of Epilepsy. But in the eyes and hearts of Kinsley’s family, this simply means the loss of a special child with a special energy.

There remains no better example of her special energy than her first trip to her beloved Disneyland. At the time, an animated movie by Disney had been released called, “Lilo and Stich.” Of course, like a pro, Kinsley dressed from head to toe in Lilo’s mini hula girl garb. In the movie, Lilo is a young Hawaiin girl who has difficulty discovering where she fits into world. As the movie continues, the audience discovers that her actions while sometimes unusual and hard to understand, are pure and whole-hearted. And as Kinsley pranced around Disneyland, clad in a spot-on Lilo outfit, it became unbearably obvious how much Kinsley desired to be cheerful and pleasant but at times seemed slightly out of touch.

When she spoke, her voice burst a tad over conventional volume. When standing in lines for rides, her body would slightly wiggle and shake. When asked a question, her face went blank until she found the sentence to stammer, a sentence that on the surface was littered with mumbled syllables but underneath, conveyed pure joy.

At the time, no other child could have been better at holding a hand with affection. Like a toddler grips with the force of nature, she too holds zero back when clasping onto a hand. Her energy became a poignant feature of her personality: talkative, funny, warm and most of all, appreciative. She, in so many ways, had mastered the art of a loving innocence.

Shortly before her first trip to Disneyland, Kinsley was diagnosed with Abson Epilepsy and her outward personality dwindled a bit. Muscle tremors started to become apart of her daily routine and seizures overwhelmed her every week.

That was nearly eight years ago. As of 6 months ago, this hand holding, hug giving, energy spewing, young girl became completely somber, non-communicative & uninterested. Her days filled with struggle and frustration. She still manifests the yearning to communicate, but her muscle tremors make it impossible for her to utter anything but a shaky set of mildly understandable mumbled phrases to all around her.

And that is why Genée appreciates the moments of mid-night hugs so dearly. They welcome back the, if only for a short interlude, the old Kinsley.

If you want to help Kinsley, all we ask is that you spread the word and help the community of undiagnosed children. Please post this on your facebook, myspace or simply click on the DIGG.com icon. Thank you.