Sebastian Burckle (21) died unexpectedly this Tuesday whilst on holiday in Mexico.

Sebastian lived with Ring Chromosome 20 Syndrome, an ultra-rare genetic condition, its main feature being recurrent and drug-resistant seizures. There are about 100 reported cases in medical literature; it is that rare.

On Tuesday (7/9) night, Sebastian had a grand mal seizure. After recovering, he went to bed but did not wake up the next morning.

Sebastian was passionate about solving complex geometrical puzzles. He was into gaming, tech and gadjets. He composed music, DJ’ed, designed and produced light & laser shows. He enjoyed surfing in the ocean. He was a pupil at the Oratory Primary School, Westminster Cathedral Choir School and Wetherby Senior School. He was looking forward to re-starting an undergraduate in Psychology and Criminology at University of Brighton.

As you can see, Sebastian never allowed his condition to define him or stop him from having the life he wanted to live.

We are devastated as a family but appreciate the many gestures of support and solidarity from friends, loved ones and colleagues.

If you would like to help us honour Sebastian’s memory please consider making a donation to Ring20 Research & Support UK CIO and help them continue their great work providing support for individuals, families and healthcare professionals who are affected by, or who come into contact with Ring Chromosome 20 Syndrome.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.