The NHS state that ‘Epilepsy is a common condition that affects the brain and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works.
They can cause a wide range of symptoms’.
Just like in Zachariah’s case, epilepsy can be linked to other conditions, for him it is his diagnosis of Lissencephaly (smooth brain) that causes epilepsy.
It affects him every second of every day. There are no breaks or moments of relief. There is no cure.
Epilepsy comes with fear and uncertainty. Its a thief. It doesn’t care. Epilepsy will strike big at any time.
Epilepsy causes pain, worry, confusion, and heartbreak.
What we’ve been told so far…
“Your son has life limiting epilepsy”.
“Your son has life threatening and drug resistant epilepsy”.
“Your son lives with constant epileptic activity and there is not much else we can do for him”.
“Your sons epilepsy is not severe enough to be considered for CBD Oil, but it could kill him”.
What we see…
Our darling boy staring into space, experiencing involuntary jerking, spluttering and vomiting, stiffening, unable to communicate, unable to prevent his eye flickering, shaking.
Our son losing skills he took so long to conquer.
Our child unable to get more than 4 hours of sleep per night due to seizures waking him up, and keeping him awake. Then unable to concentrate at school as hes exhausted.
What makes us proud…
Zachariah continues to smile, develop and enjoy his life.
Zachariah will not let epilepsy take a hold of his life, as he will push through and carry on.
How epilepsy affects daily life…
Zachariah takes meds twice daily to help ease his seizures. He has 3 monthly clinics to discuss and review his epilepsy, from these meetings he’s had various EEG’s, MRI’s, trialled different treatment such as the Keto diet and had his meds reviewed. Zachairah cannot leave the house with rescue meds now, as he can go into generalised seizure at any given minute of the day.
There is fear, but there is a plan, and there is hope.
My biggest battle with Zachariah’s epilepsy is the communication barrier. Being non verbal and having severe learning difficulties, he cannot tell me when seizures are coming, happening or when they’ve been.
I have watched him for 5 years and researched his epilepsy every day, to make sure I have the most information possible to advocate for him at the hospital.
It is a huge responsibility to say the least to care for someone with epilepsy, it often worries me that I may get it wrong, I may translate a false seizure or miss one.
This worry cannot get me down however, as I must stay focused and give my son the best care and advocacy.
You often hear parents/carers comment on the loneliness of caring for a child with epilepsy, and it can be true, but I have found that more and more of us are talking so openly about it, being real and raw to communicate how heartbreaking it is.
I have witnessed so many of my friends soldier through the unthinkable, and seen their children become true warriors as they too fight it daily.
We are not alone. We are a community who must support each other.
The picture is of Zachariah and his friends. All 3 of the boys have the same condition and battle epilepsy every day.
They are strong, and determined. They are warriors!