Ellie’s story is shared by her mum, Kim
This is my amazing little warrior Ellie, she’s just turned 1 in April, a milestone we weren’t sure she would reach at the beginning.
At birth Ellie suffered a H.I.E event (HIE stands for Hypoxic-Ischemic Encephalopathy, a brain injury caused by a lack of oxygen and blood flow to the brain, often occurring during or shortly after birth) , she’s diagnosed as severe and at first we had no idea what the future would hold for our baby girl. She had seizures on her first day of life but they stopped after some keppra (an antiepilepsy medication). She was NG (nasogastric) tube fed from birth as she had no swallow, she also had poor weight gain and dystonia (a movement disorder that causes the muscles to contract)
It took us 12 weeks to get her home home. At 4 months old we noticed Ellie doing strange movements and thought it was her dystonia, we recorded her and sent it to the epilepsy team who rang us straight away and said Ellie needed to be admitted straight away and start treatment for Infantile spasms. She was put on vigabatrin and prednisolone, 3 days later the EEG confirmed IS. She did nothing but sleep from then on, no crying or any sign that our baby was there.
She didn’t have great mobility anyway due to her high tone but now she was like a lifeless baby – no leg kicking or grabbing my lips or hair anymore.
Since stopping prednisolone she came back a little bit, she cries again… but she’s still just not quite there.
Ellie now has complex epilepsy and has multiple different types of seizures every day throughout the day and night.
We’ve had some scary hospital admissions and been asked the toughest of questions but we will always fight for what’s right for our baby girl, we will always and forever be her voice while she hasn’t got one.
She is so so so strong and she makes us all strong.
She doesn’t know it but she’s my hero, my little inspiration who shows us to never stop fighting.
We’re now a part of a huge community that we never wanted to be a part of… but it’s the most helpful, caring, full of knowledge family that are all there to support each other.
