World Encephalitis Day focus: Millie’s story

To mark tomorrow’s global awareness day we’re sharing Millie’s story, who had encephalitis at 18 months.

  Millie’s mum, Sam De Vere, shared her story with the Brain Injury Hub and it appears in full in the website’s Real Stories section. Below is a shortened version. Sam, Millie’s mum, said: “Millie was 18 months and I was putting her to bed. For some reason that night I had this over overpowering feeling that I shouldn’t leave her. Something just told me I should stay with her. Thankfully I did as she suddenly started having a seizure and having convulsions. “My baby girl was dying in my arms. It was almost as if she was gone, dead in my arms.” Millie continued to have seizures on the way to hospital then the hospital doctors took over. Sam said: “We all felt utterly helpless. It was agonising. We found out that Millie had autoimmune encephalitis and that the seizure had caused damage to every cortex of her brain. “We were told to expect the worse as Millie was in such a bad condition they were struggling to control her seizures.” Doctors told Sam that Millie wouldn’t be the same little girl after all of this and that if she survived she would be severely brain damaged, would never walk, talk, see or hear. Sam said: “We never gave up hope and Millie proved the doctors wrong and made it. Millie still continues to battle and prove people wrong.” Millie was left with a brain injury and Sam said “I was determined my little girl was going to get through this.” Sam researched and then got residential rehabilitation at The Children’s Trust – but this wasn’t until Millie was two-and-a-half years old. She wished she’d had help finding out about the service earlier. She also wished the doctors had explained what parts of Millie’s brain were damaged the most, and what they affected, as her family found it a huge learning curve. Talking about Millie’s residential rehabilitation, Sam said: “During her months there she became stronger and began to sit unaided, she learnt how to drink again and no longer needed tube feeding, which was a massive achievement.” In the first few years after the illness Millie had a lot of ups and downs. Sam said: “Sometimes she loses some of the skills she has learnt but every time Millie bounces back stronger. She is now crawling, which is unbelievable, and has started school full time. I am certainly one very proud mummy.” Sam is grateful for the great support network she had around her but still thought there should be more awareness of childhood brain injury as “it literally turns your life upside down”. Sam said: “The most worrying thing Millie and I had to worry about before was what to wear or what to do that day. Now it's medications, hospital, seizures and worrying every day will the seizures take my child from me. You always think it won't happen to you but it can. “Millie is unable to talk; she can say mum, dad, nan and granddad but that is it. She is unaware of danger and is wheelchair bound. She has been left with complex epilepsy and dystonia.” Sam concludes: “We live every day as it comes. We take nothing for granted and treasure every precious moment. “If I could offer one bit of support to parents going through a similar experience I would say “Your child has fought so hard to stay with you and you have fought with them. Cherish every moment and never give up hope.”

This case study was first published in October 2015 and Millie’s brain injury was in June 2012.

Share page
Print page
Follow us