Welcome to our Fundraising Page to support DDX3X research for a cure. 
 

Ellie was born in May of 2023 and since her birth, we have struggled with even the most simple of tasks. We spent our entire day trying to get her to feed, and she still wouldn't gain weight. We got oral ties revised, hoping that would make a difference, and it did not. We started with feeding therapy and OT at about 5 weeks old, and while we saw improvement, it wasn't quick enough. She had fairly profound hypotonia. Around 9 months, we saw that her weight plateaued and she still wasn't making enough gains. We were referred to GI and neurology. Thankfully we got into GI and saw improvement with her weight fairly quickly. Neuro took a bit longer.

around her first birthday we got into neurology, where we discovered Ellie had damage to her brain, which was probably causing the hypotonia and other delays. After that we got Ellie into physiatry, who helped her get her braces, her walker, and helps to monitor her muscle development. She has been an invaluable part of our team. We were finally able to follow up with genetics in January of 2025. He agreed that genetic testing was the route to go, so he swabbed all of us, and the waiting game began. 

Come March, shortly after we found out we were expecting Ellie's little sister, we learned she had a de novo version of DDX3X syndrome. Thankfully it wasn't inherited and the chances of her sister having it were very small, but it still put us on a whirlwind of discovering what this means for Ellie's future. We still know that she is the happiest little girl, who loves everyone she meets. It also means that there probably is an intellectual disability, significant language barriers, and motor delays. We are working with every doctor and every therapist to help her be the best she can be, but we would still love to see advancements in care or even a cure for her disorder. 
 

We appreciate you reading this far into Ellie's journey and we would also appreciate if you would help us be part of the cure.