It was 18 Dec 2018 and my close friends, Thomas and Karen Cliffe had one of the toughest nights of their life. Luke, their youngest son suffered from a prolonged epileptic seizure that required him to go on a ventilator and, pretty quickly, moved to Temple Street hospital from CUH. He was between those two hospitals for the rest of Christmas where support, good wishes were sent from family and friends (not to mention his older brother Charlie was so well behaved through it all, keeping mammy and daddy in high spirits when he did get a chance to speak to them). It became clear that day that Luke had a form of epilepsy known as Dravets Syndrome. Since then Luke has had a busy year with ambulance trips and in hospital stays. Thomas and Karen have praised the work of the Jack and Jill foundation as they help them and their two boys adjust to life with Dravets allowing them the freedom to be able to spend some quality time together as husband and wife and with their eldest Charlie while having the peace of mind that Luke is getting the best available care.

The syndrome itself is a rare form of genetic epilepsy that affects 1 in every 20,000 to 40,000 people. Development in children is usually normal in the first 2 years but after age 2 they may not progress as quickly as they get older or have more seizures. At around 6 years old cognitive problems may stabilise but most children with Dravets syndrome will have some degree of developmental disability. Other problems that may occur can be low motor tone, unsteady walking, chronic infections, low ability to fight infection, growth problems and problems with automatic nervous system. Much more detailed information can be found on the website www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome