The UK Infantile Spasms Trust (UKIST) provides a vital network of support to families with children affected by the rare seizure disorder Infantile Spasms, also known as West syndrome. This is a serious seizure disorder, and unless it’s recognised and treated early, the prognosis for affected children can be very poor. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little-known condition. By supporting UKIST, you will make a real difference.

A little over a year ago our life’s got spun round, our little Cove started to have unknown seizures. After a few hospital trips and a very demanding mum, Cove finally got her diagnosis. Infantile spasms was the name but that was about all we knew, unfortunately it’s not a very well known type of epilepsy and doesn’t really have a lot of research.
Pasha found a lovely charity and support network through Facebook- UK infantile spasms Trust UKIST.

As a family we are running to raise as much money and awareness as possible to help the charity and any family facing the difficult road of unknowns we had to face.

Luckily for us Cove is smashing it, she’s doing amazing and we are so proud of her. But this is  not always the case with IS- let’s spread awareness For Cove and all her IS family 💜