The beautiful Elliana is our Warrior this week, here parents Simon and Clara tell her story :
The story of our little princess Miss Elliana Wilson!
The first 6 months of Elliana’s life were very unsettled and we were told it was due to silent reflux and colic. She would scream most of the day. Then on New Year’s Eve 2016 Elliana was sitting on my knee and she made a strange noise and movement which kept happening every 30 seconds for a few minutes. By the time Elliana’s 2 grandmothers had raced round to the house it had stopped.
My superhero mum looks after Elliana a lot and she knew there was something not right with her. She would never make eye contact and seemed to stare into space a lot. The hospital kept Elliana in and she had more of what we now know were Infantile Spasms. We got a video of it happening on the ward and the next day the consultant almost sent us home for being an overreacting parent and only agreed to do an EEG due to a wonderful nurse who had only started working a few months before who insisted something wasn’t right.
The EEG revealed it was IS and we started treatment with ACTH and then weaning on pred. From the first ACTH injection, we haven’t seen a spasm since! Praise Jesus!! Our epilepsy consultant Dr Funston is the most incredible lady we have ever met. She came in on her days off to see Elliana and we were and still are able to email her at any time with questions or videos that we want looked at. I will never forget the day Elliana was diagnosed when my father in law asked Dr Funston will Elliana be able to live a normal life after this. The answer at that point was ‘I’m afraid I don’t know.’
Elliana’s MRI and genetic blood tests came back clear (the worst waiting game of our lives) and she is now doing so incredibly well!! She is now 18 months old and 1 year seizure free. She is still on epilim drug to help prevent seizures due to one part of her brain still showing epileptic activity. Her speech is currently our main concern (she has 1 word) but a recent review said that she has no problem communicating what she wants! Food has always been a huge challenge for us with Elliana, if it has any texture to it, it will be spat straight out! Granny Lynn is the feeding queen and often succeeds when the rest of us fail! Our family and friends have all been amazing but really we would be lost without my mum, she is such a blessing. While first in hospital, I did the worst thing and googled IS. Catastrophic was the word that still sticks in my mind and I could go on!
Thankfully we found the most amazing support network on Facebook (UK Infantile Spasms Trust Support Group) and especially in those awful early days it helped more than we can ever say.
I always say 3 things helped us through it- 1) God and answered prayers (Elliana means God hears!) 2) my family and Dr Funston and 3) Jenny Rawling from the Facebook group. When I got letters through the door with a whole pile of medical terms I couldn’t understand, I was so panicked. Thankfully Jenny would always take the time to explain what it meant and I can never thank her enough for that. I have made lots of friends through the IS support page, friends I hope to one day meet! It truly shocks me how many doctors seem to misdiagnose Infantile Spasms and I am excited for the work the team are now doing to raise awareness of the condition.
The whole experience has been the hardest thing we have ever had to face and yet we are excited for Elliana’s future and to see her grow up into a beautiful young lady. We know there may well be more hurdles ahead but we will face them all together, with a little lady who is now such a happy little girl!
Love to you all!- Simon and Clara