Marley Mansour is a beautiful 12-year-old who has been diagnosed with NARS1, which is a rare diagnosis that recently a cutting-edge treatment has been approved to heal and stop the progression of the disease possibly. 

Marley is the first in the world to receive this treatment for this disease.  Other patients have done this, but she is the first for NARS1.  This could help not only Marley but also so many other children.  As you can imagine, the treatment comes with financial barriers that insurance might not be willing to pay. 

While we are so very thankful the individual medicine being created will be free for life, many other factors exist.  Estimates for the two-year trial have been in the six figures.  We are asking our community to help support this life-giving treatment not only for Marley but also to help her pave the way for others.  Marley hopes to receive her treatment in 2026 at UT Southwestern/Children’s Health.

Kayla will be posting updates on Marley's Journey here and on her Instagram account, @MarleyTheRare. We would love for you to follow and share.

Those who would like to help the family can:

Thank you.

To learn more about NARS1, visit The Rory Belle Foundation— the home for NARS1 families. This treatment journey wouldn’t be possible without their love, advocacy, and support. Created in memory of Rory Belle, who passed away from NARS1, the foundation continues her legacy by giving families like ours a fighting chance and hope!