Real Life

Real life: My daughter has 200 seizures a week

I'd move heaven and Earth to give my girl a normal life.

By As told to Take 5

Brenda Jones, 36, from Morrinsville, NZ shares her true life story;

My heart swelled watching my daughter Haven's little pink backpack bouncing up and down as she raced into preschool.
"Bye, Mummy," she called out, barely glancing at me.
As a single mum, I was hoping to find some part-time work, so it was a relief that Haven, two, had taken so well to preschool.
But it was hardly surprising because she was such a friendly, active kid.
I had to put my job search on hold over the following weeks when Haven suffered a bout of tonsillitis.
She'd just recovered when I woke one night to hear an ear-piercing scream.
I raced to Haven's bedside and fumbled for the lamp.
"Darling, what's wrong?" I panicked.
Ripping back the covers, I found her face-down, her tiny body shaking violently.
I froze when I rolled her over and saw her lips were turning purple.
I was just about to scoop her up when she suddenly stopped jerking and closed her eyes.
Oh God, she's dying, I thought.
Haven hung limply in my arms as I raced to the car and drove two minutes to the closest hospital.
A nurse rushed us into a room where a doctor started checking Haven over.
My mind raced.
She'd seemed perfectly fine when I'd put her to bed hours earlier.
How could things suddenly be so wrong?
Haven suffers up to 200 seizures a week.
I could barely see through my tears when the doctor came and asked me to take a seat.
"Your daughter will be fine," he said.
"What?" I replied, dumbfounded.
"She's just had a seizure," he explained. "It's not uncommon for children her age to have them as a one-off. Now, her body is so exhausted she's in a deep sleep."
A wave of relief washed over me as I held Haven's little hand.
Hours later, we returned home and she was back to her happy-go-lucky self, playing with her dolls and singing.
But I was worried sick.
What if it happened again and I didn't wake up?
I couldn't bear the thought of losing her.
She was my world.
A week later, I was driving to the laundromat when I heard a familiar, gut-wrenching scream.
I turned to see Haven jerking about wildly in her car seat.
Her face was turning blue.
Slamming on the brakes, I pulled over and called an ambulance before lifting her out of the car.
By the time the paramedics arrived, I was sobbing as Haven lay lifeless in my arms.
At hospital, doctors rushed around, carrying out tests.
I tried my best to stay strong, watching her endure seven gruelling seizures over the following 48 hours, but in my heart, I was terrified.
Eventually a specialist revealed she had Lennox-Gastaut Syndrome, a severe form of epilepsy characterised by multiple types of seizures and an intellectual disability.
She can't play like a normal toddler.
"The good news is the condition can be managed at home with anti-epilepsy drugs," he said.
Haven was pumped with intravenous medication over the next few days, which helped her recover, and I could finally take her home.
But it was only days before the attacks started again.
Sometimes, her spasms were violent, others they'd just be jerky and occasionally I'd find her simply staring into space.
She was constantly in and out of hospital.
"She's having up to 200 seizures every week," I cried to her doctor. "There must be something you can do."
He tried changing her medication but nothing seemed to work.
One type made her aggressive while another left her vacant and sedated.
At the same time, I knew the spasms were slowly damaging my beautiful girl's little brain.
Within a year, Haven had gone from running into her daycare to being a prisoner in our home.
I missed her infectious laugh, her singing the wrong words to songs and, most of all, the love that she was now incapable of showing.
"It's like the Haven we knew has gone altogether," I sobbed to my mum.
I bought her a special helmet to wear outside in case she took a fall, and cushioned every hard surface in our home.
Me with Haven, two and a half.
I felt a glimmer of hope when a paediatrician suggested we try medicinal cannabis oil (CBD oil).
"It can help children with refractory epilepsy," she said. "I know a child taking it now who it's really helping."
Giving my daughter cannabis wasn't ideal, but anything was worth a shot.
But my dreams were dashed when I saw the $650 price tag.
"I can't afford this," I mumbled.
Thankfully, generous friends have so far stepped in and paid for three doses of the CBD oil.
Haven has been taking it for seven weeks now and still suffers 20 seizures a day.
Despite being almost four, she functions at the level of a two-year-old and I spend every night sleeping with one eye open, in case she suffers a seizure.
It will be three months before we'll know whether the cannabis oil will help her or not.
If it does, I'll move Heaven and Earth to raise the $1950 I need each month to give Haven a chance at a normal life.
I never imagined this would be our future.
All I want is for Haven to have the freedom to play like a normal toddler and live life to the fullest.

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