Ivy's League

Ivy's League 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 dia

gnosed 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!

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. 😂

02/21/2026
02/15/2026

Just happened to capture Ivy discovering a hilarious new trick!

02/11/2026
02/07/2026

The perfect snowy Saturday for a stroll! Ivy is making so much progress with her bigger SMOs and new walker (borrowing from Racker) 🥰

12/24/2025

She's on a roll now!!!

12/21/2025
12/21/2025

Age 2.5 brings a new milestone. Go Ivy!!!!

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