Supporting Siblings

Siblings of those diagnosed with Dravet Syndrome have to experience many things that you would never wish your child to see: prolonged seizures, ambulance trips, hospital intervention and challenging behaviour, to name just a few. 

They also need to adapt to the day-to-day pressures of living with Dravet Syndrome - the fact that there are times when plans are cancelled, holidays not possible, sleepovers just too intense and the simple fact that their Mum and Dad are stressed, worried and exhausted. They may also experience those feelings of isolation that often go alongside the pressures of living with a disabled sibling. 

Despite all these difficulties, many families report how helpful, caring and loving siblings can be to their Dravet brothers and sisters. We like to call them ‘super siblings’.

Case study: what's it like to be a sibling of a young person with Dravet Syndrome?

In her own words, Ellie talks about her experiences as a sibling and her very special relationship with her sister, Amy

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Supporting super siblings

It is important to be aware of the potential impact that living with a brother or sister with Dravet Syndrome may have for siblings. Honesty, at a level appropriate to them, is often the best way forwards. Try to involve the siblings where you can so that they do not become actual carers, but they have some level of involvement. For example, you could let them come along to the occasional appointment, help their sibling with physio exercises or help with bath time. 

Siblings’ organisations

If you think your super sibling might be struggling, there are specialist sibling support groups that you may find helpful, such as the organisation Sibs, which provides useful information and support for siblings of disabled children, and for parents too. 

These organisations provide services that can be hugely beneficial in helping siblings to understand their feelings, share fears or worries and know that they are not alone.

In addition, many local authorities run sibling groups, where they can get together with other children in a similar situation. Many hospices also run sibling activities or have play therapists who are able to help siblings organise their thoughts and feelings. If you feel this is something that would be beneficial, speak to your social worker or GP who will be able to refer you to young carers’ organisations.

A letter to give to teachers

Sometimes the ups and downs of living with a brother or sister who has Dravet Syndrome can impact school life. One of our families shared a letter for teachers setting out the different ways in which a sibling's daily life could be disrupted by Dravet, both at school and home. We thought it was a brilliant idea, and with much thanks to its original author, we're happy to share a template version of the letter here

Nominate a Super Siblings

Many parents often speak about the many, amazing little things that these brothers and sisters do for everyone in the family and how they could not manage without their super siblings. Unfortunately, the demands of everyday life means that siblings rarely get the recognition they deserve. Our annual Super Sibling award is for these young, unsung heroes of the Dravet family. Find out how to nominate your super sibling for our annual award here (note: a sibling can only win the award once).

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