Our journey with Ring Chromosome 20 Syndrome [r(20)] proved to be challenging and impossible to live with. Rachel lost her life to epilepsy just 2

Sebastian Burckle (21) died unexpectedly in September, 2023 whilst on holiday in Mexico. Sebastian lived with Ring Chromosome 20 Syndrome, an ultra-rare genetic condition, its

To every relative, friend and professional… I write this with the hope of bringing change for anyone who knows any child or adult with a

Who is this surprising little 17-year-old? Gabriel was, is and above all is curious!

Jaevin’s epilepsy has gotten worse over the years. He has been induced in several comas every year since 2015 n the ICU for status epilepticus for several days at a time until the neuro team found a concoction of medication that would calm his seizures down.

It just didn’t make sense, the constant tiredness, being lost in school, the pauses when she talked. I had never seen anything like that.