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.
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