Chris has signed up to run the derby 10k, with just 14 weeks to train from not running at all to running a full 10k with the support from my sister Samantha who runs regularly.

The main reason Chris wanted to challenge himself and support this amazing trust is because back in December our Bertie was diagnosed with Infantile Spasms, which is a rare form of epilepsy. We were extremely lucky that we noticed the spasms to get the medical support and medication that was needed to control Bertie’s seizures, as this type of epilepsy is often missed or miss diagnosed.

It was such a difficult time for myself and Chris as we went from having a cheeky, smiling boy who was meeting all his milestones, to a baby who wasn’t interested in playing and didn’t show much emotion for 3 weeks and his smiles only started to come back as we are weaning him off the strong medication, we still have a long way to go, but there is definitely light at the end of this dark tunnel!

The support and information from the trust really helped us to come to terms with and understand Bertie’s condition.

This trust also supports families by providing specialist equipment and child development classes for parents.

Any donations would be greatly appreciated.

Thankyou

Sarah, Chris and Bertie

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.