Just when we thought we had been through enough after 5 weeks on the NICU/SCBU after Matilda was born at 32+5, shortly before she turned six months old she had a series of seizures which has led to a diagnosis of West Syndrome (also known as Infantile Spasms) - a rare form of epilepsy usually presenting itself before the age of 1. We then found out the bleed on her brain (Intraventricular hemorrhage) that she had at birth had caused Periventricular leukomalacia (PVL) - damage to the white matter of the brain that is responsible for movement, which was caused by the traumatic bleed on her brain when she was born. The PVL caused the West Syndrome. As a result, her development will be severely delayed. Doctors cant tell us what the future will hold - some children will go on to develop as expected, following extensive input from Physiotherapy and Speech & Language Therapy, but some children aren‘t so fortunate and often end up unable to walk without aids, dependent on wheelchairs, severely mentally handicapped, and some children will die as a result of other complications. Matilda is also at high risk of developing Cerebral Palsy, but we won‘t know until she gets a bit older.

Before this, Matilda was developing well for her corrected age - the seizures took that away from us. Our laughing & smiling girl who looked at us, could roll over and had just started to control her head was snatched from us by West Syndrome. We‘ve now had to start again from stratch.

After discussing with other parents who are going through similar to what we are, we are crowdfunding for private physiotherapy as some families only have access to 1 hour of treatment A MONTH! We are also crowdfunding to be reveiwed by a service called Snowdrop - they provide tailor made programmes for children with developmental problems to stimulate and enhance abilities. Please feel free to have a look at their website http://www.snowdrop.cc/about-us.aspx

At the moment, her seizures are under control, which is an absolute blessing, but we are always under constant fear she will relapse. We don‘t know what the future holds but we do know some things - Our daughter is a fighter who deserves a chance.