Home BBS Lucy’s syndrome is a “rare disease”

Lucy’s syndrome is a “rare disease”

by Shawni

Just wanted to connect people to the BBS Family Association Instagram page which is HERE.

Because yes, today is Rare Disease Awareness day.

And any type of awareness about syndromes is incredibly helpful because:

Awareness = Care = HOPE.

More awareness brings more doctors and researchers to the scene. Connects people. And yes, makes you feel like you’re not alone fighting the battle.

BBS (Bardet-Biedl Syndrome for those who are new here) is Lucy’s syndrome and oh! How we are trying to fight that thing!

Please check out that instagram page if you want to know more, they are putting out some great stuff right now.

Answers to all these questions:

There’s even a picture of “little Lucy” (in her red glasses phase…these ones were getting a tad bit small, ha!) there to thank you for your interest.

Oh how that girl is begging for help right now. She is angry at life and I don’t blame her. Yet she keeps on going, keeps working, keeps hoping. Keeps that feistiness that is going to get her places (but that is also giving her mother a run for her money).

Yes, awareness makes a difference.

So click HERE to find out more.

Thank you for loving our girl all through these years, and for sending so much love and support.

More posts about Lucy’s syndrome:

The story of Lucy’s diagnosis

Doctors and experts…YOU are the expert

Two tips for raising children with special needs

A little extra awareness about Lucy

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4 comments

Laura March 1, 2022 - 2:54 am

Thank you for sharing ❤. I even went to read the story of when she was officially diagnosed. Our children’s diagnoses are not the same, but I know how it feels to recieve that hard diagnoses.. even though deep down you already knew. My son was diagnosed with schizophrenia almost a year ago. He turns 15 this weekend. It’s so hard. We love him even harder though. Here’s to being strong mothers for all of our children no matter what they face. ❤❤❤

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Shawni March 5, 2022 - 11:23 pm

Oh thank you Laura, and yes, here’s to being that mama bear our children need. My heart reaches out to you as you nurture and love that son of yours.
xoxo

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Julie ODell March 1, 2022 - 8:28 am

I didn’t realize there was an Instagram page! Thanks for sharing.

Reply
Shawni March 5, 2022 - 11:23 pm

Yes I think they do such a good job keeping it up!

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