NYDIAROSE VARIO

photographer

ROHHAD

Nydiarose Vario

Close your eyes letting memories of your childhood overpower your stress of today. Remember playing tag at recess? Or swinging to the highest point you could reach on the swings until finally letting go, releasing your body soaring through the sky. Feeling the sun kissing your skin as you take a deep breath of that crisp fresh air. 

What would you do if these things, easily taken for granted, were stolen from you? If you could only use one hand for tag because the other was literally dragging your capability to breathe behind you? Would you let the machine that filled your lungs with oxygen hold you back?

Marisa's vent never held her hostage. She never saw it as a set back. Instead she lived her life with more confidence than anyone I know. She danced her heart out on stage with full ambition,  spinning and twisting all while towing her vent beside her. Acting on a crowded stage, she was always aware of her space and how to weave her way in and out of all the children, never forgetting her lines (or anyone else's). She always had to remember not to literally leave her breath behind.

Now, can you even imagine the sheer joy that could rip your heart into pieces, a smile exploding off of your face when you find out that this machine, that after years has become a part of your everyday life, is no longer a necessity 24 hours a day? For an extended amount of time each day, Marisa can experience her true "freedom" as an eight year old.

Marisa came home from Chicago with an extra sparkle in her eye. YOUR contributions have placed that glimmer there. 

 

I could not be happier or more thankful. ROHHAD has seen an abundance of motivational support. I am so happy I could cry. This debilitating disease WILL get its butt kicked! It is truly amazing to witness firsthand the kindness of strangers prolonging lives of children. I can't thank you all enough.

 

Learn more about ROHHAD, upcoming fundraisers, or donate at www.rohhadfight.org

If anyone has new inventive ideas for raising funds, please don't hesitate to share!

And as always, please please please keep spreading awareness!

 

XOXO

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