DAILY LIVING & MOBILITY

Superhero, Superstar: Destroying Myths One Day at a Time

Rare Disease & Syndrome

Nicole Boucher

Never Say Never

Never say never. No other line will or can ever describe the resilience and strength of our little superhero, Jacob. Defying the odds since birth, our son is showing the world to never judge a book by its cover...or in his case, by a medical diagnosis. In his short life he has managed to prove medical professionals, developmental specialists and judgemental naysayers wrong.

Myth #1

He will never breath on his own. Wrong. Jacob is breathing fully independently, very rarely requiring oxygen and has remained out of hospital since August (despite many colds and viruses).

Myth #2

He has low tone and will not be physically independent. Wrong. Jacob is sitting, standing and has even taken steps. He loves to roll around on the floor, especially when he is trying to get his favourite toys. He is developing his fine motor skills, moving beads on wires, pulling toys out of cups and using a pincer grasp to grab small objects.

Myth #3

Jacob will never eat orally. Wrong. Although Jacob has a g-tube, he is fed 100% orally. In as little as 7 months, he has learned to re-establish his suck and swallow, he eats thickened purées and has even begun to eat solids- bringing crackers to his mouth independently! He has overcome an oral aversion and sensory issues, all related to many intubations, and now loves to brush his teeth! Jacob is eating so well that he is starting to gain weight and tone!

Myth #5

Your life will be miserable with Jacob. Wrong!!!! Our life has been blessed with Jacob. He has taught us how to persevere in the face of adversity, love unconditionally, celebrate the small things and live life to its fullest. Jacob has strengthened our family, our faith and our drive to show the world that different is beautiful. Jacob is not a diagnosis, a rare diagnosis, a medical mystery. Jacob is an 18 month old, happy, music loving little boy with an amazing head of hair. His laugh is contagious and his smile is bright. He has a light that draws people in, making them friends forever. He fills your heart and soul and always, always, always, is living proof to never say never!

EMPOWER OTHERS!

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