Nicola Warren

Lindsey, Helen and I (Nicola) are pretty amateur runners, so running a half marathon (Bath Half) is something new for us and in doing so, we would love (between the three of us) to raise £1,000 for a little girl who is very special to us and for an inspiring charity called Brainwave www.brainwave.org.uk who help Olivia and children like her after life takes a slightly different turn for them. Here's Olivia’s story.

About 6 years ago in 2012, Olivia's life changed forever. Olivia was born a healthy little girl, but at just 4 months old she had her first epileptic seizure. The seizures rapidly increased and at 9 months old she was diagnosed with a rare brain condition called ‘hemimegalencephaly’, something that affects 1 in a million children. At 12 months old her seizures were uncontrollable and at worst she was having 40 seizures a day and was admitted to the High Dependency Unit and put into an induced coma.

Utterly heart breaking for everyone.

In the end there was only one option - the family went to Great Ormond Street Hospital where she underwent a 6-hour operation hemispherectomy brain operation. After the operation everyone hoped that the Olivia they knew before she had become poorly would come back, and she did!

However, she would now suffer from a form of cerebal palsy called hemiplegia. For Olivia this meant that she would have a weakness on the left side of her body particularly her upper arm and have very little function in her hand. At this point it was very uncertain as to what Olivia would be capable of doing - crawling, walking, writing, reading - all the things you take for granted for your child were unknown for Olivia.

The family started a new journey with Olivia learning life skills all over again, from crawling to bouncing (!) to eventually walking, an amazing milestone for Olivia. This is where the charity Brainwave came in and helped. Brainwave’s support and their amazing team of people helped not only Olivia enormously, but also helped the whole family move forward successfully. Brainwave gave hope to the family to focus on what Olivia could do rather than what she couldn’t do. 

With Brainwave a bespoke programme of physio was created for Olivia to help her reach her milestones and her full potential in life. This physio programme became part of everyday life and Brainwave were and remain instrumental to Olivia’s recovery. Olivia loves going to back to Brainwave every 6 months for new physio activities and to play in the sensory room and to see the team who are such a big part of her journey. All of this happens without Brainwave receiving any government or statutory funding and therefore rely on the generosity of individuals and businesses to make a difference to the lives of children and families that it supports.

Olivia’s Mum, Dad and big Sis are an amazing and forever humble family. Seeing what Olivia can now achieve through all their dedication is very special. Olivia is a little girl who lights up the room, who fills it with her presence, charm and determination.

Thank you for taking the time to read this and if you choose to donate, thank you for your kind donation. We are incredibly grateful… all we need to do now is run the Bath Half!

Nicola, Helen & Lindsey (The running trio)

Nicola Warren