Siblings of those diagnosed with Rett syndrome have to experience many things that you would never wish your child/ children to see: regression, seizures, ambulance trips, medical interventions, and challenging behaviour, to name just a few.
They also need to adapt to the day-to-day pressures of living with Rett syndrome: the fact that there are times when plans are cancelled, holidays are not possible, sleepovers just too difficult, and the simple fact that their parents/carers may be worried, exhausted, and seemingly be too preoccupied with their sibling.
They may also experience feelings of isolation or guilt that often go alongside the pressures of living with a disabled sibling. Life as the sibling of someone with Rett syndrome can be tough.
Despite all these difficulties, many families report how caring and loving siblings are to their sisters and brothers. Having a sibling with special needs undoubtedly brings challenges, but there’s a positive side too. Living with a sister or brother with Rett syndrome helps to teach resilience, compassion, and kindness. With the right knowledge and support, siblings cope and adapt, and often develop extremely close bonds with their sisters and brothers.
Supporting super siblings
It is important to be aware of the potential impact that living with a sister or brother with Rett syndrome may have for siblings. Talk honestly to them, at a level appropriate for their age. Research shows that siblings cope best when they are told about what is happening and when they can share their feelings about it. Of course, it’s not always easy to start these conversations and you may find it easier to discuss issues with children by doing activities together. With younger children you could try making a scrapbook about your family that includes information about family life with Rett syndrome. You could read story books together about children who are disabled or have additional needs and their siblings.
Books you may find helpful
Come Over to My House by Sally Rippin & Eliza Hull
What Clarabelle Didn’t Forget by Caryn Hunt
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 children and adult siblings who have a sister or brother who is disabled, 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 ‘young carers’ groups, where siblings 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 GP, school family worker, or social worker who will be able to refer you to young carers’ organisations.
If you’d like to talk to us about how to support your non-Rett child/children, please email support@rettuk.org
Books for adult siblings
Self-care eBook for adult siblings
East Midlands Ambulance Service – My EMAzing Activity Pack
The East Midlands Ambulance Service produced an activity book aimed at children below 12 years of age, showing different scenarios and how to call 999 which you can print off from their website here. There are also links to a cut-out model ambulance and colouring sheet. Designed for children aged 5-10 years, the Children’s Activity Pack contains 12 pages of activities. It includes educational messages, such as:
- How and when to call 999
- What to expect when you call 999
- Different people who work in the ambulance service and what they do.
We think this is a fantastic resource for siblings of those who live with Rett syndrome, and helping them feel more confident and relaxed when an ambulance and paramedics arrive at their home. You can download the pack here.
Nominate a super sibling in our Annual Sibling Awards
For this October Awareness, we are launching our new Annual Siblings Awards to recognise the amazing unsung ‘sibling’ heroes of the Rett syndrome community.
For further information and to nominate a sibling click here. The closing date for the 2025 nominations is Friday 10th October 2025.
