Shreve’s Story: The Next Chapter
Every great story has a turning point. This is ours.
Our precious daughter, Shreve, lives with CTNNB1 Syndrome, a rare genetic disorder that affects her ability to move, communicate, and navigate everyday life. For almost four years, we have celebrated every hard-earned milestone while holding onto hope for what her future could hold.
Now, Shreve has been selected for a gene therapy clinical trial and is expected to be the youngest child in the world to receive this treatment for CTNNB1 Syndrome. Treatment will take place in Slovenia or possibly here in the United States, with the location still being determined.
This opportunity brings tremendous hope, but also an enormous financial undertaking. We are raising $300,000 to cover the out-of-pocket costs associated with her treatment and care, including hospital bills, travel, lodging, insurance, food, and the daily expenses of living away from home during treatment and recovery. If treatment takes place in Slovenia, we anticipate being overseas for approximately five to six months.
Gene therapy is still experimental, and we do not know what the outcome will be. But this opportunity represents hope for Shreve’s future and could help researchers learn more about treatment for other children living with CTNNB1 Syndrome.
Our community has already helped carry us farther than we could have imagined. Every donation, every shared post, and every prayer helps us take the next step.
Thank you for helping us write Shreve’s next chapter.
