Health and wellbeing

Funding level: Up to £1,000


Infantile Spasms is a rare type of Epilepsy that occurs in young children, usually under one year of age. About 400 children a year are diagnosed in the UK - including my son Edward, who was diagnosed in June 2016 aged 7 months. This is a serious seizure disorder because a child with Infantile Spasms has a chaotic brainwave pattern that may cause loss of skills and brain damage.

Thankfully, the UK Infantile Spasms Trust (UKIST) was recently established in 2017. In August 2018, UKIST were able to prioritise funding and invite 60 children affected by Infantile Spasms and their families to Camp Mohawk (Berkshire). This is a multi-functional day centre for children with special needs and their families, set in 5 acres of beautiful countryside. The centre provides a range of activities, facilities and natural space to encourage children with a variety of special needs to play, socialise and learn in a secure and caring environment.

Our ability to attend Camp Mohawk ensures that children and young people affected by Infantile Spasms receive the support necessary to realise their full potential as valued individuals. It provides a ‘safe haven’ with both indoor and outdoor facilities where the children and their families can come to relax, play, develop social skills and build their self-confidence in a positive and uplifting environment that accepts and welcomes them all.

Given the geographical spread of children affected by Infantile Spasms in the UK, this opportunity to attend Camp Mohawk provides us with an invaluable opportunity for families to connect on a personal level – the journey from diagnosis is a tough one, especially in terms of mental wellbeing for the wider family.

This opportunity to secure Aviva Community funding would enable 60 children affected by Infantile Spasms, and their families, to attend Camp Mohawk again in June 2019. This will allow both our existing families to re-connect, and welcome and offer support to newly diagnosed children.


More generally, the Trustees and the wider community are extremely passionate about raising awareness of Infantile Spasms – there is very little awareness of this condition even within the medical community. The speed of diagnosis and treatment is critical to achieving better outcomes for the children affected. Please take the time to watch our video -

Project Video

UKIST - UK Infantile Spasms Trust

Moment of Pride

Prior to 2016 there was no Infantile Spasms support network in the UK. We now have a strong network of parents, and Camp Mohawk provides families like mine an opportunity to connect face to face – this is hugely important in terms of the children’s wellbeing and emotional support for those affected.

Location: Wargrave