Rhian Adams, a British expatriate living in Dubai, is set to undertake a 150-kilometer camel ride across the Dubai desert to raise awareness of Angelman syndrome, a rare genetic disorder affecting the gene on chromosome 15. The challenge, titled “Carried through the sand – 15 days for chromosome 15,” will take place from October 12 to 26, with Adams riding roughly 10 kilometers daily on a route managed by the Hamdan Bin Mohammed Heritage Centre’s camel farm.

Adams’ six-year-old son, Samson, was diagnosed with Angelman syndrome at 10 months old. The condition typically impairs speech, movement, learning, and communication abilities and often presents additional complications such as seizures, sleep disorders, and feeding difficulties. Samson’s diagnosis came with bleak early prognoses; doctors initially warned he might never walk, talk, or live independently. Despite these challenges, Samson has made notable progress. Although he remains non-verbal and cannot stand unaided, he has learned to walk with support and communicates through photographs, touch-activated devices, and facial expressions. Adams describes him as a child who enjoys music, movement, and play, and who laughs frequently.

Adams, a single mother raising Samson and his older sister, Seren, has devoted considerable effort to balancing the demands of Samson’s medical care with the pursuit of a fulfilling childhood. Samson’s health challenges have necessitated frequent hospitalizations, including a month-long stay in intensive care.

The camel ride’s 15-day schedule is designed to highlight various aspects of living with Angelman syndrome, such as diagnosis, seizures, sleep issues, communication, development, social inclusion, and moments of joy. Adams plans to document the journey with videos that intersperse footage of the camel trek with insights into her son’s life and the condition itself.

In preparation for the expedition, Adams has engaged in physical training focused on strength and balance to manage the rigors of riding camels over dunes and uneven terrain, as well as emotional preparation. She emphasized that the endeavor is not a test of personal endurance but a means to shift public focus toward the individual behind the diagnosis.

Adams expressed hope that her campaign would reach healthcare professionals throughout the United Arab Emirates, encouraging greater clinical awareness, research, and understanding of Angelman syndrome to better support affected children and their families.