Cornelia Suzanne Skolaski is my great niece. She grew and developed as a normal child aside from never gaining the ability to walk without assistance. In November of 2013 just after her second birthday, Cori Sue was diagnosed with the rare disease Metachromatic Leukodystrophy (MLD). This progressive, terminal illness is deteriorating her peripheral nervous system and the white matter of her brain, severing the lines of communication between her brain and the rest of her body at an alarming rate. There is no cure for symptomatic children like Cori, and after periods of rapid progression, they typically pass away between 5 and 8 years of age.
By June 2014, sweet Cori Sue had lost all of her gross and fine motor skills including the ability to walk with a walker, sit up, hold toys, eat by mouth and speak. She spoke her last words just a few days after Easter of 2014.
Now 6 years old, Cori has a g-tube in her stomach through which she is fed food and medications. Because she is unable to control the movement in her limbs and torso, she must be moved around in her wheelchair, as well as spend up to 2 hours a day in her stander. She is also unable to control the secretions in her mouth and airways, and is thus prone to contracting aspiration pneumonia. She requires 2-4 hours of respiratory therapy (breathing treatments, CPT vest, cough assist) every day and requires frequent suctioning to also help prevent pneumonia.
Her sight and hearing are both diminished, as it takes longer for her to process both sights and sounds. As of now, she can only see in dark rooms where the object is illuminated. She is able to respond to pleasant situations and sounds with eye blinks and smiles and the occasional attempt at a laugh.
Cori is fond of being on her outdoor swing that was custom built for her. She enjoys long walks outside where she can feel the sun and breeze on her face, as well as being read to, listening to music, and participating in games with her big sister. And of course like all children her age, she loves anything relating to Frozen – watching the movie, listening to the music, having Princess Elsa visit her and tell her stories. She actually likes to be referred to as Cori-Elsa!
Although I live over 13,000 km away (8,500 miles), I cherish getting to Facetime and video chat with our adorable Cori. Her face lights up when she sees us on the screen, and she absolutely loves watching our pet rabbit, Frankie. Our often brief video sessions are filled with lots of eye blinks, smiles, and the occasional hint of laughter. I’m told by her mother that the only time she ever tries to laugh is when she video chats with us in New Zealand. Hearing that laughter puts a smile on my face and inspires me to complete this challenge.
To follow Cori Sue’s journey and get updates on her care, join her on Facebook https://www.facebook.com/caringforcori
