Warrior of the Week

Our Warrior of the Week, is Olivia, she is simply adorable. Here Jade, one of our UKIST team tells Olivia’s story. We couldn’t pick from her photo’s so are sharing them all !

This is my beautiful Olivia. She had a seizure where she lost consciousness and turned blue on the 15th November 2016 just 4 days after turning 8 months old. Later that day while at hospital she was doing these funny movements that I was told to record to show the consultants.. we were then told they were fairly certain she was suffering with Infantile Spasms on the 17th.

Waiting for the results obviously Google came into play and our world flipped upside down with the things we read.. they came into our room at 9am the next day with the medication ready to start and told us it was Infantile Spasms that she was suffering with. The things we were told by the consultant about Olivias future were heartbreaking. Olivia was already delayed – at 8 months not rolling or sitting etc.

But I was so positive and thought now she has a diagnosis and is being treated – give it 6 months she will have caught up! Olivia has since now been diagnosed with a (very large) duplication in chromosome 18. They say this is the cause of all her problems. Olivia is 2 in March and it’s so hard not to think of the things she “should” be doing but then I catch her eye and she flashes her amazing smile and I’m just so grateful for her. I have learnt to just take each day as it comes.

I no longer have any expectations of what I think she will be doing in 6 months time or even 6 years time. She is mine and I’ll take her any way she comes. She is absolutely amazing and anyone who meets her falls in love with her !

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