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 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!

12/24/2025

She's on a roll now!!!

12/21/2025
12/21/2025

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

11/30/2025

Caught a cool first today at Ivy’s friend Tegan’s 3rd birthday party!

From the incredible Coffin-Siris Syndrome Foundation:We are wildly grateful to the 29 teams, 222 donors, and 42 team mem...
11/09/2025

From the incredible Coffin-Siris Syndrome Foundation:

We are wildly grateful to the 29 teams, 222 donors, and 42 team members who raised nearly $14,000 for the Coffin-Siris Syndrome Foundation.

To everyone who shared the campaign, and who brought people living this wild life together, thank you!

To everyone who purchased a shirt or a hoodie, thank you!

Your generosity allows us to carry out our mission of research, support and inclusion for people with Coffin-Siris Syndrome into 2026 and beyond.

Please consider a $5 donation to support our walk next week! All proceeds benefit the Coffin-Siris Syndrome Foundation.
10/10/2025

Please consider a $5 donation to support our walk next week! All proceeds benefit the Coffin-Siris Syndrome Foundation.

Please join us for the 3rd Annual 2025 CSS Walk, Run, Roll!Wild About Inclusion Fundraiser on October 18th - 19th, 2025, supporting the Coffin-Siris Syndrome Foundation!The Coffin-Siris Syndrome Foundation was established in 2017. Our mission is to connect, support, and inform the CSS community, and...

10/04/2025

Finally got a video of her carrying around her big toy today! 🤣

10/02/2025

Our little rock star! 🤩

Same outfits one year later! How our pumpkin grows. 🥰
09/21/2025

Same outfits one year later! How our pumpkin grows. 🥰

Please join us for the 3rd Annual 2025 CSS Walk, Run, Roll supporting the Coffin-Siris Syndrome Foundation. Their missio...
09/09/2025

Please join us for the 3rd Annual 2025 CSS Walk, Run, Roll supporting the Coffin-Siris Syndrome Foundation. Their mission is to connect, support, and inform the CSS community, and to promote related research.

On October 18th - 19th, 2025, we will walk to raise awareness about Coffin-Siris Syndrome and support the work of the Foundation. Read more about what your funding supports below.

THANK YOU from the bottom of our wild hearts! Any amount donated makes a difference.

Please join us for the 3rd Annual 2025 CSS Walk, Run, Roll!Wild About Inclusion Fundraiser on October 18th - 19th, 2025, supporting the Coffin-Siris Syndrome Foundation!The Coffin-Siris Syndrome Foundation was established in 2017. Our mission is to connect, support, and inform the CSS community, and...

08/11/2025

Miss Ivy loves Dada! Next goal- Mama. 🤣

Address

Freeville, NY
13068

Website

Alerts

Be the first to know and let us send you an email when Ivy's League posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram

Category