Layla: Festival of Mark Making (Part 1)

The SCN8A community is one that unfortunately suffers devastating losses on a regular basis. In part one of this two-part series, Costa and Ghaith share with us the story of their daughter, Layla. 

Layla’s Story

​By Costa Loucopoulos and Ghaith Al-Badri, Layla’s Dads, SCN8A Australia
Note: The following story is a visceral and emotional depiction of medical trauma and child loss.

Layla, our daughter, is no longer with us because SCN8A took her life. We could never have imagined how horrible it must have been for her to endure the challenges of the disease, as well as the burden that the existing treatments carry with them. On her gravestone it reads, ‘Eternity in Love’ and we genuinely believe that we are already together…in time. Time is precious and even though we all know that, the death of a nine-month-old makes you understand it fully.

But.

First, we had to deal with the trauma and understand how to even function. It was like a cruel set of dominoes falling one after the other, leaving us breathless at every drop.

Layla died.
We don’t know when exactly that night.
But we took it in turns – one slept with Layla and the other with her older sister.
We set an alarm for every two hours.
Our hand was always under Layla to feel if she was in trouble.
We would even come in and check on each other.
It was exhausting.
 
We went to the hospital for help.
The specialist children’s hospital sent us home and said that next time we should go to our local.
Our local said that we should go to our specialist hospital.
This lasted months.
It was exhausting.
 
Costa put her in the car on New Year’s Eve and decided she deserved to be defended...ruthlessly.

Emergency - New Year’s Eve party… “3, 2, 1, Happy New Year,” just outside the door.
It was surreal.
 
In that new year, Layla began to lose her smile and the use of her body. 
We saw depression creep into her beautiful eyes.
We did all we could think of – massages, music, play therapy, educator…it goes on.
It was an honour and a joy.

In the last week of her life, she had over 120 seizures. 
We made an appointment with a doctor in Melbourne – a world specialist.
Layla never made it.
 
We cried. One of us even burned their face with stomach acids – the tears were violent. 
Utter devastation. 
Deep silence.
Like looking at the world spinning from space.
 
There is nothing more vile and more insidious in existence than SCN8A.

There is nothing more supportive and loving than the SCN8A community that stands before this and gives critical hope to us all.
 
Our family is deeply grateful to the International SCN8A Alliance, and especially to The Cute Syndrome Foundation (TCSF) because they reached out and kept us going…living. We were helped to commemorate our child financially, along with countless hours of caring contact from altruistic, loving mums and dads as we cried non-stop for months. 

“Layla: The Festival of Mark Making, Mark II” was a project that celebrated Layla and her love of drawing and colour, mostly funded by TCSF. It brought children’s artwork from around the world to celebrate them and their ‘voice’. 

We now build hopeful and joyful things together and make a positive change to our community, over time.

After Layla’s death, Costa and Ghaith endeavored to create a meaningful way to honor and remember their daughter and her love of drawing and color, while also providing a way for others in the SCN8A community to express themselves. In the second part of this two-part series, TCSF volunteer Karen Varner shares her experience attending the Festival of Mark Making event that was held on what would have been Layla’s second birthday.