A British mother living in Dubai plans to travel about 150 kilometres by camel across the Dubai desert over 15 days to raise awareness of Angelman syndrome.

Rhiannon Adams, a mother of two, will undertake the challenge from October 12 to 26 at Al Nakhra Camel Farm, under the supervision of the Hamdan bin Mohammed Heritage Center, covering around 10 kilometres each day.

The initiative, titled “Carried Through the Sand – 15 Days for Chromosome 15,” is dedicated to her six-year-old son, Samson, who will soon turn seven and was diagnosed with Angelman syndrome at 10 months old. The number 15 in the challenge’s title refers to chromosome 15.

Angelman syndrome is a rare genetic disorder associated with impaired function or expression of the UBE3A gene on chromosome 15. It can cause developmental delays, severe speech impairment, movement and balance difficulties, and seizures.

Samson is unable to speak but communicates with those around him using pictures, communication aids, facial expressions and other methods. He has been admitted to hospital 25 times and has also spent a month in intensive care.

Adams said doctors initially warned that Samson might never be able to walk, but he can now do so, although he is still unable to stand independently without moving.

Each of the challenge’s 15 days will focus on an aspect of life with Angelman syndrome, including diagnosis, seizures, sleep, communication, development, social acceptance and happiness. Adams plans to share footage from her journey alongside videos of Samson and information about the disorder.

She hopes the initiative will increase awareness of Angelman syndrome, promote greater acceptance of affected children, and draw more attention to research into treatment and improving their quality of life.