Are You Treating Children With Rare Disease The Wrong Way?

Parents who have children with rare diseases know the struggle of seemingly innocent questions and conversations.

“How is your child doing?”

“Why can’t your child play today?”

“How strange! He/she was fine just yesterday!”

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Yes…please…by all means, please make this conversation as awkward as you possibly can… Source:

What parents seem to hate the most is when their child stops becoming a wonderful individual and, instead, becomes the “sick kid” in the eyes of others.

Suddenly, instead of wanting to know if your child is also obsessed with Elsa (though really, what child isn’t obsessed with Elsa?), these parents want to know how your child can possibly get through the day.

“Oh, the poor darling! Bless her heart!”

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Ugh. Gag me with a spoon. Source:

Instead, many parents, like Ger Renton, whose son has Hunter Syndrome, want you to ask about their child, and not about their disease. Really simple, easy questions, too. Like:

“What’s your son’s name?”

“What does your son enjoy doing?”

“What’s your son like?” 

See? I told you it wasn’t that hard.

That’s really all it takes to make the life of a parent, whose child has a rare disease, that much easier. Honor their child, and not their disease. And above all, don’t pity them. They don’t want pity; they just want their child to enjoy their life.

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Because your real self is freaking awesome! Source:

Just because a child has a rare disease doesn’t make them any less a child, who likes to have fun, laugh, love, and discover. If anything, children with rare diseases teach others, especially their parents, about the power of joy, happiness, and not letting setbacks get in the way.

If we’re honest, it’s a lesson on which we could all use a refresher.

Mic drop. Source:

Parents, what do you wish people would ask you about your child with a rare disease? Share in a comment below!

Farrah Fontaine

Farrah Fontaine

As a child, Farrah Fontaine always knew she wasn't normal. Part of her family descends from the ancient Silk Road, which made her stand out in the Great White North. That's why she wants to give voice to the voiceless so they know they're not alone.

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