When Ciara and Jacob Martinez named their daughter Isis five
years ago they had no idea that the lofty moniker, after the Egyptian goddess
of fertility, would put them through such hell. The Arizona couple thought the
name was fitting since they’d had trouble conceiving and consider their little
girl a “miracle,”
Isis is special in another way too: she was diagnosed in 2012 with the rare neurodevelopmental disorder Rett Syndrome, for which her family began fundraising to pay for a trip for her to see a specialist in California.But last August stickers with their tagline, #TeamIsis, started getting the wrong kind of attention as strangers mistook their group for the terrorist organization, Islamic State of Iraq and Syria, aka, ISIS.
Isis is special in another way too: she was diagnosed in 2012 with the rare neurodevelopmental disorder Rett Syndrome, for which her family began fundraising to pay for a trip for her to see a specialist in California.But last August stickers with their tagline, #TeamIsis, started getting the wrong kind of attention as strangers mistook their group for the terrorist organization, Islamic State of Iraq and Syria, aka, ISIS.
“I honestly didn’t think anything of it when I printed
them,” said the stay-at-home mom of two, 23, including another daughter Imelia,
2, with her husband, Jacob, 27. “I had started to hear of ISIS the terror group
a couple of months earlier but to me that’s just an acronym, my daughter’s name
is something completely different. But after [a fundraising event we held for
our daughter], people started trying to drive me off the road, flipping me off,
being aggressive… It was horrible.”
Haters have tweeted Ciara telling her that her ill daughter
now, non-verbal due to her syndrome, is “a disgrace to America with that name.”
Others continue to urge her to change Isis’ name amid all the torment but Ciara
tells Yahoo Parenting that she’s standing strong.
“Isis has beaten so many odds,” says the mom of her
first-born, who endures 35 hours of various therapies for her condition every
week. “She has proven that she can do all things with great practice so if she
can fight and live this life, I can do a better job and help fight the world
for her.”
Well-wishers always ask how she does it, Ciara says. “People
ask if it’s been hard, but I just say, ‘If you were in my position, wouldn’t
you fight for what you have to fight for? I’m letting the world know that this
is what her name is. This is her disease and we’re not backing down. I want to
spread awareness.”
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