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Ivy's League

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This started as a medical update page, but we now invite you to celebrate Ivy's updates and milestones with us! Thank you for your support. 🌿💞

Ivy is thriving with an extremely rare genetic condition called Coffin-Siris Syndrome (SMARCB-1 variant). This past June, we welcomed our sweet baby girl, Ivy, into the world. She was born on her due date at just 4 lbs 14 oz. After a few weeks in the NICU for her small size and trouble feeding and a couple of subsequent hospital stays, we did a whole exome genetic test. On September 7, Ivy was diagnosed with Coffin-Siris Syndrome, a rare genetic condition with less than 300 documented cases. She has a more severe variant (SMARCB-1), and we were told she will most likely be non-verbal with moderate to severe physical delays and intellectual disabilities. Since receiving Ivy’s diagnosis, not much has changed for our family. The diagnosis has completed the puzzle of why she has her various health problems, but we truly believe that diagnosis does not equal prognosis. We are working with individual therapists and specialists on each specific concern. We spent the first few months of her life juggling appointments and doctor visits, and I am happy to say that she is happy and safe at home with us. We are going to do everything that we can to give her the best life possible, and are blessed for the resources that we have, and all of your support!

11/01/2026

Happy Halloween!!! 🐞

10/20/2026

A note from Ivy's teacher. 🥹

09/27/2026

Her new favorite activity! She will even climb into the bin yourself and wait for us to pick her up. 😂

09/23/2026

https://www.zeffy.com/en-CA/fundraising/ivy-lindhorst

Please consider the Coffin-Siris Syndrome Foundation which is a huge part of our lives. The 2026 Walk, Run, Roll is October 17-18!

All proceeds benefit the Coffin-Siris Syndrome Foundation!Keep Moving Forward: 2026 CSS Walk, Run & RollWe’re thrilled to announce the 4th Annual 2026 CSS…

09/06/2026

On the go!

08/13/2026

Ivy learned a new skill at daycare!!! 🙌

06/08/2026

Submit your art by June 1 for a chance to be featured in our NYC gallery! This July, Positive Exposure will exhibit art made by you: individuals with a connection to rare disease.

Email [email protected] when your work is completed to receive instructions on how to send it in the mail.

DETAILS: https://positiveexposure.org/submit-your-art-for-rare-disease-showcase-at-pe-gallery

04/03/2026

Little Ivy shocked us the other day at her Grammy's and took off up the stairs! We didn't even know she could do this. 😂

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