AwareNow: Issue 25: The Light Edition

Page 107

‘SCARRED NOT BROKEN’ EXCLUSIVE COLUMN BY LORI BUTIERRIES

REINFORCEMENTS

A STORY ABOUT HOPE & SMA Once upon a time, a little boy named Jacob fought a war.

It was a war without end.

On the day it began, the doctor told Jacob's parents, "I do not want to give you false hope," when he revealed Jacob's terminal and degenerative condition to them.

The prognosis was grim.

To paraphrase, "There would be no winning this battle," he told them.

Jacob was condemned.

Spinal Muscular Atrophy or SMA was a death sentence for children.

Thankfully, Jacob was too little to understand what was being said at the time or to grasp the concept that he had been born with a body that would stop working even if his will to live remained strong and unfaltering.

Therefore, Jacob didn't know that he wasn't expected to wake up each day with a smile on his face

or that he wasn't supposed to act like 'normal' children his age instead of a sick kid in need of 24 hour aid.

Jacob simply lived life to the fullest and dreamed big dreams despite his handicaps and physical limitations,

which made his health and mobility challenging to manage.

107 AWARENOW / THE LIGHT EDITION

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