Spark Rare Hope

*Words sewn into the canvas

Program: NARS1

Marley’s story:

Marley is one joyful warrior! She loves swimming, singing her favorite “Hallelujah” songs, worshipping, and enjoying her favorite meal she lovingly calls “pizza pie.” Marley’s silly, sassy, and social personality lights up every room she enters. Whether she’s strutting around the baseball field in a tutu or flashing her big, contagious smile, Marley knows how to brings joy wherever she goes.When Marley was a baby, feeding challenges and growth concerns marked the beginning of her medical journey. She began facing developmental delays, leading to a diagnosis of failure to thrive and global developmental delays. Genetic testing in 2016 yielded no answers, as the NARS1 gene was not known to cause symptoms until 2020. Marley’s formal diagnosis came at the age of nine and a half, revealing she has NARS1 disorder, a nano-rare condition affecting fewer than 100 individuals worldwide. We were fortunate to find the Rory Belle Foundation, which is devoted to families affected by NARS1.  Without the Rory Belle Foundation, we wouldn’t have known that this disorder causes cognitive, physical, and neurological issues, including progressive peripheral neuropathy, what research and drugs (like n-Lorem) could work, and that Marley, and we, have a community.

Marley’s biggest challenges include conversational speech, mobility challenges, due to neuropathy and low muscle tone, and navigating developmental hurdles, but her resilience shines through. She works so hard in therapies like OT, PT, speech, and ABA continuing to make progress despite her diagnosis. Marley’s newest adventure is RPM therapy (Rapid Prompting Method). It’s a way to communicate for non-speakers and unreliable speakers using letter boards, typing, and handwriting. RPM presumes competence in every student. Through this technique we are learning Marley knows how to spell complex words, can rhyme, loves poems and even knows how to do math, including multiplication. Recently when asked what her favorite thing is about herself, she spelled, “my hair.” Her parents agree!👍

Today, Marley’s loved ones are hopeful for the future where a personalized treatment will help her overcome the burden of her condition, allowing her to fully embrace her vibrant and joyful self and live her very best life possible.