When I found out Sammie, our youngest daughter, was pregnant I had mixed emotions.
Pure joy at the prospect of a new addition to our family but I felt a tinge of apprehension. I am sure all of our family felt this too.
In 2014 our eldest daughter Manda gave birth to Ivy Florence. Ivy was born with severe brain damage due to a placenta abruption during labour. Ivy died at three days old.
When Layla was born, our fourth grand child, we all felt relief at her safe arrival.
When Layla was 3 weeks old Steve and I flew to Auckland, New Zealand to meet her.
At 10 weeks old I remember seeing a video of Layla doing some odd movements.
Sam and Cam took Layla to the doctors since we all felt something was going on….the doctor was unsure. Epilepsy, IS and brain research is ever evolving, but since IS is not a common condition there are lots of different experiences when trying to get a diagnosis.
Sam and Cam weren’t happy, neither were we, but we had to manage our concern since we were living at the other side of the world and we were over protective, as you can imagine.
Also I didn’t want to unduly upset first time parents; I felt lots of unease and worry at that time.
Sam and Cam persisted and took Layla to the children’s hospital, Starship.
Manda, my husband Steve, my sister Janet and I have been supporting from afar and supporting each other. Researching, speaking to others and coming up with positive suggestions. The UK Infantile Spasms Trust (UKIST) has offered a real wealth of information and I can’t thank you enough for all your hard work.
As a family we offer an ear, love and spur each other on, wishing we could be with them and do so much more….
In those early days I was oblivious to the daily struggles endured by Layla and her mummy and daddy.
December 2019 things were progressing with the epilepsy, Layla was taking various anti epilepsy medications, had an MRI, lumbar puncture, countless EEG’s and genetic testing was undertaken. A spot was found on Layla’s brain, front right lobe, albeit very small.
We didn’t know what this meant….
On 15th January 2020 we flew to New Zealand since we felt Sam and Cam needed some extra parental support; we missed them all so much and we needed to be with them.
We experienced the daily seizures first hand, the application of emergency meds to stop them, the trauma of seeing our beloved grand daughter endure tonic-clonic seizures.
The strength and courage of Sam and Cam was something to behold.
It was during this time that Layla was diagnosed with IS.
We all felt traumatised.
Having to leave them and return to the UK was easily one of the hardest things I have ever had to do; second only to losing Ivy.
The distance between us is hard, thank goodness for technology and FaceTime.
After many hospital visits, multiple concoctions of frontline treatments, urinary infections, antibiotics, a PET scan, ketogenic diet, not forgetting the temporary tube feed, bad reflux and therapy, Layla has just reached the milestone of becoming one year old. Because of all that IS and epilepsy means, we truly appreciate how very precious Layla is.
She is nothing short of an absolute star.
When Layla turns two there will be a review on brain surgery as an option and a review of the likelihood of focal cortical dysplasia as a diagnosis.
Starship hospital in Auckland has been amazing. The neurology team has been all encompassing and fabulous. They have shown such compassion and empathy to Sam, Cam and Layla.
Layla has been offered the chance to take part in a research project for epilepsy, which we are thrilled about.
Layla is actually going to be helping other families in the future, maybe by helping families get an earlier diagnosis. Hopefully this research will help Layla for her future years, whilst also helping Sam and Cam plan for their future.
I hope every day for the best for my grand daughter and her mummy and daddy.
I know we have to make the best of things but some days it feels like climbing Everest, literally…
Despite Layla experiencing daily spasms she is doing great with therapy and all options are being considered and tried to find the most effective treatment.
There is not enough cotton wool in the world that I would wrap them up in, if I could.
I feel helpless sometimes, I watch my daughter, I admire her so much. I have hope every single day.
I am so thankful for the UKIST website and support page, other parents and grand parents; you all know so much about this ongoing journey and you all feel like our extended family.
Sue Blackburn
