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To the Parents Searching for a Diagnosis for Their Medically Complex Child


With Rare Disease Day right around the corner, I would like to reach out to those who are undiagnosed. Rare Disease Day is the last day of February every year, and every year, I see tons of profile pictures and lots of great information about different disorders and diseases. What a great month it is for awareness!

I know how frustrating it can be when you’re searching for your child’s diagnosis. My son was undiagnosed for seven long years before they found out he has a form of Periodic Fever syndrome. My daughter is medically complex and has several diagnoses but is also considered undiagnosed. She is 9.

Moms and dads, I know you spend countless hours searching symptoms on the computer, taking screenshots and notes to bring to your next Genetics appointment. I know you lie awake at night at worry. I understand hopping from doctor to doctor. I know the sheer frustration of feeling like you can’t take one more “We don’t know.”

I also know the feeling of finally finding out a diagnosis, only to find out there is not much you can do. On the flip side, now you have a name. Probably one you can’t pronounce at first. One you might have a love/hate relationship with. It will be a lifeline to other parents who can give you advice, tell you what works for their child and offer lots of virtual hugs and love when you need it.

This is what I’ve learned from having two kids with two different rare diseases.

You rock! I want you to go to the mirror and tell yourself that right now. You are doing the best you can.

Your kid rocks!

You can do this. Keep searching. Many times parents might figure out the diagnosis before the doctors do. But don’t let it take over; enjoy your life.

I hope you find the name. I hope I find the name for my daughter. But if I never do, I believe that’s OK.

girl in grey cardigan

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