Teresa O'Connell

Imagine waking up every day with the uncertainty of what challenges lie ahead.  For those living with ZARD (ZC4H2 Associated Rare Disorders), along with their families, this is a daily reality as there are only 250 diagnosed cases in the world.  Since ZARD is so rare, research funding and treatment options are limited, leaving families (including us) with little support and few answers.  

As many of you know, our brave 2 year old daughter Lila was diagnosed with ZARD at 3 weeks old after suffering a seizure at 24 hours old.  Despite the hardships, she continues to inspire us with her strength and determination (even taking a few unassisted steps in her walker and self propelling her own wheelchair!).  She is a food LOVING, animal obsessed, feisty little girl who shows us daily what is important in life through that big smile that always remains on her face.  Pretty impressive considering we were told she would most likely be dependent on a feeding tube her whole life.  Until Lila, we never thought twice about the things your body just "does" such as the ability to walk, swallow and breath. 

ZARD is an ultra rare genetic disorder with neurological and neuromuscular involvement.  It causes immense physical challenges for those diagnosed.  Currently, there is no cure but with your help we can change that.

The 12th Annual Million Dollar Bike Ride, hosted by the Penn Medicine's Orphan Disease Center on Saturday, June 14, 2025, is an extraordinary fundraising event, which aims to collect funds for scientific research on rare diseases. The ZC4H2 Research Foundation is participating in this event as it is its main fundraiser. Our family will be riding with Team ZC4H2 in Philadelphia this year!

Your donation will fund critical research and provide hope to families facing the challenges of ZARD.  Every dollar brings us one step closer to finding a cure, improving quality of life and making a meaningful difference for those living with ZARD.  In addition, the ZC4H2 Research Foundation will match up to $15,000 of donations made!!

Please join us in this fight and consider making a donation today.  Together, we can make a difference.  From the bottom of our hearts, we thank you for your generosity and support. 

Love,

The O'Connells (Teresa, Riley, Corey & Lila) 

P.S. - To learn more about ZARD and spread awareness, please visit the Foundation's website at:  www.zc4h2foundation.org.