This is Lily's story

It was 7:30am on her first ever Christmas me and my husband couldn’t wait to go in and wake her up as she had so many presents and a beautiful dress to wear. But when my husband did go in he was met with a limp and lifeless little girl, he brought her through to me in his arms and just passed her over. her body was so heavy and her arms, legs and head were all limp I tried everything to get her to breath or show any signs of life. I was overwhelmed and terrified I thought I had lost my 6-month-old baby but after banging her on the back she let out a tiny whimper but again fell back in to the unresponsive state.

My husband frantically rang the paramedics and followed all their instructions which saved her life he cleared her airways and put her in the recovery position by this time she had turned to a purple colour. The ambulance arrived and we were rushed in to hospital in to resuscitation. Still having no idea what’s going on and watching our little girl of 6 and a half months struggle to even keep her eyes from rolling back she had 5 more seizures. After giving her antibiotics and anti-seizure medication she was sedated and taken for a CT scan to try and identify what had happened to our baby shortly after she was admitted to the ward and this would become our home for the next couple of weeks.

At 12:52 am on the first night she was taken away for a lumbar puncture something we will never forget her little body squished together and just a look of desperation. In the coming days she had MRI's, Blood cultures, Urine cultures, a heart trace, an EEG and countless other tests and examinations our poor little baby who was once happy and playing was quickly becoming miserable and fed up with being constantly prodded and poked. All her tests came back negative meaning no meningitis so she was taken off all the antibiotics although she kept having seizures sometimes it could be up to an hour as she proved difficult to cannulate and ended up having an emergency line put through her head. It was an awful time and this poor little girl who was almost crawling was bed ridden for these weeks completely knocking back her confidence and her ability not to mention having to have her hair shaved. She was eventually diagnosed with epilepsy with the only clear link being to her sleeping patterns, if she doesn't get enough sleep or can’t sleep or wakes up funny she has a seizure which increases her risk as we wouldn’t know if she had one during the night and we might not get there in time. We were so very lucky last time.

She is going through constant tests every month to try and find abnormalities in her brain and also MRI scheduled as she also has a pituitary cyst on her brain all of which is such an ordeal for a little baby and no quality of life it is also an increase in travel money for us as parents, she should be enjoying her life and exploring new places and playing not in and out of hospitals all over the place. We are trying to raise money to buy her a motion sensor pad for under her cot which will alert us of any abnormal movement, an apnoea monitor for when she stops breathing and also a video and audio baby monitor for peace of mind to check she is OK also for her other needs such as special transport as she can no longer travel safley on buses due to being so overwhelmed our journeys end in multiple seizures. Most parents are thrilled when their children are in bed but for us it’s the scariest time of any day you never give sleep a second thought of being a danger to anyone but for us it’s a constant worry of ‘what if’

It was the scariest time of our lives and almost losing our baby girl after going through so much to have her, it was just awful and something we really won’t be forgetting for a long time coming. something we hope no one else ever has to experience or go through!

Being young parents, we are on a low income and I am unable to work being the only one other than Ethan in the family specially trained for her medication, we have tried apply for these things through the government like a grant and they take months to come back with an answer and with lily's seizures still continuing with no signs of stopping we are desperately trying to find this money. We also feel awful about her missing her first ever Christmas and can’t think of a way to replace those special memories so want to try and take her on more days out as a family and hopefully give her the best birthday in may in an effort to make up for this.

Any donations at all will be gratefully received. Thank you for taking your time to read a bit about our struggle with epilepsy. Raising awareness for conditions like this is so important and especially in babies as it’s so much harder as they can’t tell you how they feel or what’s wrong.