Welcome to my FOXG1 fundraising page!
Our family is fundraising in honor of our beautiful five-year-old daughter Eliza, who has FOXG1 syndrome, and for all of the incredible children around the world living with this condition.
We have a common saying that Eliza is the only person we know who is always the best version of herself. She is pure joy, with an infectious smile, a can-do attitude, and a splash of mischief. She lives a full and vibrant life, surrounded by family and friends who love her immeasurably. She enjoys music (especially listening to her Gigi's choral music and her Uncle Christian's acoustic guitar), riding her therapy horse Lula, and practicing ballet with her beloved personal care attendants.
Although it is hard to say that we would change a thing about our pumpkin, we would--in a heartbeat--take away the debilitating disease that has placed so many challenges in her path. Like many individuals living with FOXG1 syndrome, Eliza is non-speaking and does not walk, crawl, or get herself into a seated position. She has limited use of her hands and difficulty sustaining her grip for more than a few seconds, leading to her complete dependence on others for nearly every activity of daily living, from feeding to dressing to operating basic toys. Her sleep is disrupted, in part because of a movement disorder that keeps her body busy at all hours, and it is not unusual for her to be awake for significant portions of the night. She has had feeding difficulties since birth, and received a g-tube in March after years of struggling to consume sufficient calories orally.
We yearn for a healthier life for Eliza, and pray nightly that her future is big and boundless, shattering the grim picture we received on diagnosis day. Even improvements that might seem small for most--the ability to hold her head up long enough to participate in circle time at preschool, to hold a spoon and bring it to her lips, to nod "yes" or "no"--would be positively life-changing for Eliza and our family. We are humbled and blessed that Eliza was born at a time in which these things, and so much more, are genuine possibilities thanks to the work of the FOXG1 Research Foundation, a parent-led nonprofit driving a historic effort to bring the first-ever treatment for FOXG1 syndrome - a potentially life-changing gene therapy - to children around the world.
Right now, every dollar raised is part of the Million Dollar Match, meaning your gift is matched dollar for dollar, up to $1,000,000!
Here’s how you can join the $1,000,000 match:
- Donate: Every dollar helps, and right now every dollar is matched!
- Share: Spread the word by sharing this page!
Thank you for being part of this incredible movement! It means the world to our family.