At the age of 7 weeks old Presley started showing signs of seizures however we were told by numerous health professionals that this was all normal in a newborn. Lets call it Mums intuition but I knew something was wrong and didn't stop going back until I got answers. We were then told that he had epilepsy which was the reason behind these weird movements he had been making.

The first few months we were able to control his seizures with his medication however in October they became increasingly worse and unfortunately for him if he wasn't asleep he was seizuring. The only way we could describe him was he was like a zombie. He showed no emotions, he had forget how to clap, he no longer smiled or laughed at us anymore - it was heartbreaking. His first Christmas was horrendous with him having around 20 seizures that day. The same for this first birthday - he didn't want to open any presents or play with any new toys.

In January whilst at a routine consultant appointment Presley had 3 seizures within 2 minutes and we were told we would have to go straight into QA for assessment and an EEG. This was when we got the diagnosis of Infantile Spasms. A course of steroids and other medication and our baby finally after 4 months smiled at us again and started to get his little personality back. Our boys a warrior and has been so strong through out all of this so lets give back to this incredible charity and help them to help others going through what we have.

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.

Steph x