Rowlett, TX – Marley Mansour, a courageous 12-year-old girl diagnosed with the rare genetic condition NARS1, is at the center of a growing community effort to secure her access to a groundbreaking treatment that could change her life and benefit countless others with the same condition.
Marley’s mother, Kayla, shared her determination to obtain the proper support for her daughter and the numerous hurdles they faced before finally receiving the diagnosis. It wasn’t until a neurologist at Texas Scottish Rite recommended further genetic testing that they found the answers they needed. Although the family had previously completed genetic testing in 2017, new tests became available in 2020 that ultimately provided the critical information necessary for Marley to receive the support she requires. Also read their recent interview with KERA.
While the individual medicine being developed by the n-Lorem Foundation will be provided free for life, the overall expenses for the two-year clinical trial present significant financial barriers. Marley is set to be the first patient in the world to receive this specific treatment, paving the way for future advancements in care for others with NARS1. The Mansour family has launched a Support Registry to help cover the costs associated with treatment, which is estimated to be in the six-figure range.
To help support Marley, the community is coming together for a special event series, set to take place from November 5 to November 8, 2025, at the Acacia Collective located inside The Grove Community Church. This three-day sale will offer an array of treasures, including furniture, home décor, clothing, and holiday items, all generously donated by community members.
Marley’s mother, Kayla Mansour, has relentlessly pursued a proper diagnosis. “It’s been quite the journey,” Kayla said. “We didn’t have her diagnosis until she was 9 1/2, and it was a lot of ups and downs trying to figure out how to best help her.”
The n-Lorem Foundation, which focuses on creating individual treatments for patients with nano-rare diseases caused by single gene mutations, has played a crucial role in Marley’s treatment journey. With a commitment to providing experimental antisense oligonucleotides (ASOs) for free, for life, n-Lorem is dedicated to supporting patients like Marley who have no other treatment options available.
As Marley prepares for her treatment, the support from the community continues to grow. “It’s truly amazing how many people are coming together for Marley,” Kayla expressed. “This journey may be difficult, but it has brought so much purpose to our lives.”
For those interested in helping Marley and contributing to her future, the community sale from November 5-8 is a perfect chance to shop, donate, and volunteer.
