An update on Rowan

Last spring, this congregation put forth an incredible effort to raise money to help fund clinical trials aimed to develop a cure for infantile neuroaxonal dystrophy (INAD), a condition diagnosed in children that mimics Parkinson’s disease, ALS and Alzheimer’s. Specifically, we came together hoping to beat a deadline that would allow a little girl living in our community to benefit from this therapy. 

Currently, Rowan, age 2, is suffering rapid deterioration from INAD. When we gathered together last spring, we did so in a final effort to try and push Rowan’s family into reach of clinical trials that could reverse her condition and save her life. Sadly, that deadline has passed and there wasn’t enough money for Rowan to participate in the trial, but we should be proud of what we achieved. Every dollar raised went towards finding a cure for INAD. With the help of Sue Brittle and her boundless energy, our spaghetti dinner added considerably to the fundraising effort. 

Rowan continues to be a beautiful, charming 2-year-old with the brightest blue eyes you’ll ever see. While she has lost the ability to use her wheelchair because her torso and neck are too weak, she still loves to dance, go outside, and read books. The Bluey theme song is the highlight of her wind-down time. Rowan is fighting every day to hold onto her physical skills. Cognitively, she knows something is wrong and often holds her hands up and wonders why they won't do what she wants.

As Rowan’s mother says, “By the time INADCure raises enough to start gene therapy, Rowan will likely be unable to benefit from the treatment because of her steep losses, but you can't give up on a kid just because it's a long shot.”

We don’t plan to give up on Rowan, and we are proud and grateful to this Saint James’ community for the herculean efforts made to make a difference in the lives of children and families managing the devastating effects of INAD. 

Visit inadcure.org/fundraising to learn more about fundraising efforts and how to get involved.