Second Grader Hopes to Stay Connected Socially Despite Rare Disease

September 28, 2016

“Well, I like to do tumbling and I like cheer, and I like playing with my friends and running,” said Ariyah Rovinski, 7.

All those activities make it tough to keep Ariyah Rovinski and her cousin Sarah still for very long. Ariyah has that typical second-grader energy, but her body can’t always keep up. She has a nagging cough that just won’t go away, and started when she was born.

“She had constant pneumonia and we didn’t know what was wrong with her,” said Melanie Rovinski through tears.  For three years, Melanie watched her daughter wind up in the hospital over, and over, and over again, until eventually Ariyah had part of her lung removed. Only then did doctors finally diagnose her with “PCD”, Primary Ciliary Dyskinesia.

“The hair like structures in your mucus membranes don’t work, so they cant sweep the mucus out which makes the bacteria build up,” said Melanie, “and that’s what causes the recurrent infections.”

It’s a genetic disorder that’s both rare and incurable.

“They say by the time they’re in the mid twenties to thirties they have to have double lung transplants, if they even make it that long, so it’s just kind of a fear of what the future holds for her,” said Melanie.

Right now, Ariyah copes by using a special vest on for 20 minutes every day and night to shake the mucus in her chest loose, while of course donning her lucky Green Bay Packers surgery cap. It’s a type of normal for the seven year old, but not one many other people can relate to, including those she goes to school with.

“Well, someone in my class, he makes fun of me for coughing and it’s not my fault,” said Ariyah.

Ariyah hopes Facebook can connect her with someone who understands.

“I thought that it would be cool to have lung buddies,”

In a post shared already more than 200 times, Ariyah explains her condition and her hope to meet someone just like her.

“We would probably tell stories when we were little and we had our lung out,” said Ariyah with a smile.

And for mom, Melanie, the post shows that after three years she didn’t give up, and neither should anyone else who has a sick child.

“As a parent you deserve to have answers for your child.”



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