At the IDEA League UK we take supporting our families very seriously. We do this in a number of ways including organising get togethers and family weekends away for our family members and by operating a support line, which can be reached on 07775 347234.

To help assist our families we provide a Pulse Oximeter Scheme. Pulse Oximeter Machines monitor a person’s heart rate and oxygen levels. Typically when someone has a seizure their heart rate increases and their oxygen levels drop. If they are being monitored on a Pulse Oximeter Machine during a seizure the monitor will sound an alarm, informing the parents/carers who will then be able to administer emergency treatment if necessary.

Children with Dravet Syndrome are at an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy Patients). Having a Pulse Oximeter can allow parents the peace of mind to be able to have a good nights sleep, secure in the knowledge that if there child was to have a seizure, an alarm would sound.

Unfortunately these machines are not routinely available on the NHS. This is why the IDEA League UK is dedicated to providing one to any family in the UK with a child with Dravet Syndrome.
Each machine costs in the region of £1,000 and to date we have been able to fund monitors for every Dravet family that has applied.