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Finding Joy as a Parent to a Child With Sanfilippo Syndrome

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Do you experience joy each day? I can honestly say my daughter Keira, who has a terminal illness called Sanfilippo syndrome, experiences joy and bliss at least several times a day.

keira smiling

Usually these moments are the result of something minor like our neighbor’s dog chasing a stick or just the word “cupcake.” I often wonder why it is that Keira is so happy when I know how much discomfort and frustration accompanies her life. Perhaps that has been the wrong thing to wonder about…

Maybe the better question is why I don’t feel joy as often as she does. I used to be joyful as a boy, but as time went on and I lost the naivety of youth, I built up the twin bodyguards of cynicism and sarcasm to protect myself from the difficulties and setbacks of life. And if I am being honest, I often allow the daily grind of work and adult responsibilities to outweigh and hide my most basic and intrinsic inner joy from breaking through. But now, as I witness the ravages of Sanfilippo stealing the logic, language and reason away from Keira, I have seen laid bare the core instincts of human nature. As all her material wants and needs begin to fade way, I have learned what remains, an unfettered and incorruptible joy.

keira playing with the dog

As our family moves forward, I am going to try harder to tear down the walls and barriers built up over the years and let my inner joy shine through. I want to soak in all those simple moments with Keira and hear the most natural sound of a good belly laugh.

Will you join me and let your #InnerJoy shine through?

Follow Keira’s Journey on Facebook.
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More about Cure Sanfilippo Foundation at:
Originally published: April 29, 2016
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