April warrior – Charlotte

On 31st January 2016 Charlotte was born via emergency C-section five weeks early. She has two older brothers who were very excited to meet their new sister. Charlotte struggled to feed from the start and was diagnosed with neonatal sepsis. After twp weeks of antibiotics she was allowed home and we thought all was well.

Fast forward to January 2017 when we took Charlotte to A and E at Birmingham Children’s Hospital after we noticed she was making some strange movements. Our worst fears were confirmed later that day when we were seen by a neurologist who looked at the video and diagnosed infantile spasms- in that moment our lives were turned upside down. The next day Charlotte had an EEG which showed hypsarrythmia and an MRI that showed that she had suffered a massive stroke in the centre of her brain. We immediately started on vigabatrin and high dose steroids which left our previously happy and smiley child sleeping most of the day. After a month in hospital we had another eeg and the decision was made to start weaning off vigabatrin. Thankfully the seizures stayed away and we began physiotherapy and occupational therapy to help Charlotte start using her left side. Since then we have had lots of hospital stays as she finds it hard to fight off infections. Last week Charlotte had another EEG as we are concerned that she maybe be having a return of seizure activity.

Charlotte is a very happy little girl who loves spending time with her brothers. She has started walking and loves to jump on the trampoline. Her speech is improving all the time and she is starting to speak in small sentences. She still has PT and OT and is trying hard to use her left arm. She has no left peripheral vision but adapts to that well. Overall she is doing amazingly well, from what we thought would be the outcome when she was diagnosed to now is phenomenal and we are eternally thankful for her progress.

We would like to thank UKIST for the incredible support and knowledge they offer continuously to ourselves and many other wonderful families who find themselves travelling this uncertain journey and for the kind donation to purchase Charlotte’s wheelchair.