Support Kainin's Journey to Fight Cockayne Syndrome

We’re creating a GoFundMe for Kainin (K-Man Strong) to help him reach the Viljem Julijan Association for Children with Rare Diseases in Slovenia—a beacon of hope for families facing rare conditions. Kainin has Cockayne Syndrome Type B, a severe genetic disorder caused by mutations in the ERCC6 gene. It impairs the body’s ability to repair DNA, leading to premature aging, developmental delays, neurological decline, and, tragically, a shortened life expectancy.

Cockayne Syndrome (CS) is a rare, inherited disorder caused by mutations in the ERCC6 or ERCC8 genes, which impair the body's ability to repair damaged DNA. This leads to progressive degeneration across multiple systems.

Symptoms of Cockayne Syndrome

Symptoms vary by type (I, II, or III), but commonly include:

Growth and Development

Neurological

Vision and Hearing

Facial and Physical Features

Skin and Sensitivity

Extreme photosensitivity

Cold, bluish skin

Decreased ability to sweat

Other

⏳ Life Expectancy

Life expectancy depends on the severity and type:

- Type I (classic): Symptoms appear in early childhood; life expectancy is typically into the early teens.

- Type II (congenital): Symptoms present at birth; most children do not survive past age 5.

- Type III (mild): Rare and less severe; individuals may live into adulthood, sometimes into their twenties or thirties, though this is uncommon.

We are asking for your help—with high hopes and full hearts—to get Kainin to Slovenia, where the Viljem Julijan Association for Children with Rare Diseases is working alongside scientists to develop a potential gene therapy for Cockayne Syndrome Type B. This rare and devastating condition currently has no cure, but research is underway that could change everything.

Your support could help unlock a future where children like Kainin have a chance to grow, thrive, and live beyond the limits of this disease. Every donation brings us closer to hope.

Thank you,

K-Man Strong Family