On October 27, 2021, Little Luca joined us earth side. He came right on schedule with no complications during pregnancy or delivery and from day one was our perfect little angel.
As time progressed, Luca began to miss milestones. While we were slightly suspicious something was amiss, we could have never imagined the diagnosis we were about to receive.
In July 2023 Luca was diagnosed with a rare and fatal genetic disease, Cockayne Syndrome. This is a terrible and almost unheard-of disease. No doctors, no current approved treatments, a very small community of people know anything about this disease.
Through social media, we found a family that was 2 years ahead of us on their journey battling Cockayne Syndrome. They are nothing short of miracle workers, moving mountains to save their boy and all the other children fighting rare Cockayne Syndrome. They created the Riaan Research Initiative. They have done INCREDIBLE work and are partnering with UMASS Chan Medical School to develop a potentially lifesaving gene therapy. Manufacturing is already underway.
We need YOUR help. We are raising funds to support children who will participate in gene therapy clinical trials once the FDA grants approval to begin under an Investigational New Drug (IND) application. The cost can reach $350,000 per child. Your support can help give Luca- and children like him- a chance at life.
Please consider donating to the Riaan Research Initiative. Not only to save Luca, but to continue to save many generations to come.
Thank you for taking the time to read our story. This is just the beginning.
*Riaan Research Initiative is a 501(c)(3) non-profit organization.*
Kindly,
The Ibarra/Nichols families.
