Joubert Syndrome

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@jujubearaustin

MightyTogether 3mo

I’m new here!

Hi, my name Beth and my son is 8 and living with Joubert Syndrome and Autism Spectrum Disorder. We live in Nebraska and there are no other individuals that we know of that have Joubert Syndrome. Looking for advise on how to navigate his journey.

#MightyTogether #JoubertSyndrome
#AutismSpectrumDisorder

(edited)

8 reactions • 3 comments

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Mighty With Migraine 2y

I'm in my 3rd day of a bad migraine. I notice my migraines last longer and are more intense than in past years. Anyone else experiencing this?

#Migraine #JoubertSyndrome

4 comments

Story

Portrait handsome smiling young man looking up

Portrait handsome smiling young man looking up

Scott MacLellan

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Joubert Syndrome

6y

'Mommy, That Little Boy Has a Beard!'

I’ve always been pretty short for my age. It’s partly to do with my disability (something about limbs, growth and mobility). Over the years, especially in adulthood, it’s resulted in quite a few funny and strange encounters with people. For the record, I have no problem with people asking me things related to my disability [...]

Story

Woman standing in open door

Woman standing in open door

Christa Harkins

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Joubert Syndrome

7y

Our Home Isn’t a Hospital

The first thing you’ll notice after walking through our front door is a bright blue accent wall to the left. Your attention will then be drawn to the strand of outdoor lights I decided looked best indoors, and amidst the cozy candles, potted rosemary and eclectic paintings you’ll notice framed photos of our friends and [...]

Story

mother holding child’s hand

mother holding child’s hand

Christa Harkins

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Joubert Syndrome

8y

10 Things I Learned After I Married a Father of Children With Special Needs

When my husband, Dylan, was a stranger approaching me for the first time, he asked for my name. He apologized because he hadn’t “done this sort of thing in a long time” and didn’t “really know what to say or how to say it.” He blushed and told me I was beautiful. He was shy and sweet and still is. The [...]

Story

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Joubert Syndrome

9y

I Hate You, Joubert Syndrome, But I Need to Thank You for a Few Things

Dear Joubert syndrome, You’ve turned my life upside down. Over the last five years I’ve cursed you oh so many times. I’ve called you every name in the book, cried about what you’ve done to me, my family and most important, my daughter. But I’ve never gotten the chance to say thank you… Yes, [...]