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Your Child Might Have a Rare Disease When...


Being a parent to a child who has a rare disease can be overwhelming at times. I am constantly shuffling him to therapies: occupational, speech and physical therapy. We drive almost three hours to see specialists at a children’s hospital to ensure our little one is getting the best care possible.

There have been times when I honestly thought he wouldn’t make it, but now he is thriving. He’s such a happy-go-lucky child, admires his big brother and loves YouTube.

I wanted to compile a bunch of relatable statements that I feel will resonate with others currently going through the same journey as us.

When you have to repeatedly spell out your child’s rare condition… your child might have a rare disease.

When nurses, doctors or therapists give you a look when you tell them your child has DYRK1A syndrome… your child might have a rare disease.

When you know your child’s referral specialist’s name and they know yours by heart… your child might have a rare disease.

When you have your insurance’s escalation office number on speed dial… your child might have a rare disease.

When a simple “cold” can take out your child… your child might have a rare disease.

When people give you a dirty look for using the handicap parking spot… your child might have a rare disease.

When you’re told your child doesn’t “look” like he has a disability… your child might have a rare disease.

When they’re misdiagnosed too many times… your child might have a rare disease.

When you’re told your child doesn’t “have it that bad”… your child might have a rare disease.

When you know more medical vocabulary then your friends… your child might have a rare disease.

When you don’t like to take your child out during the summer for risk of overheating and seizures… your child might have a rare disease.

When strangers ask you how old your child is and are shocked to hear he is almost 3 years old… your child might have a rare disease.

When there is a loss in the same rare disease community and it affects you to your core… your child might have a rare disease.

When you know more about your child’s condition then their doctor… your child might have a rare disease.

When you celebrate all of the inch-stones… your child might have a rare disease.

Lastly, when you can count on one hand the number of close friends you have since the diagnosis… your child might have a rare disease.

What would you add? Let us know in the comments below.