Sarah Myrwoda should be planning her daughter Skylar’s 13th birthday party next month.
Instead, the Howrah mum is preparing to say goodbye after Skylar died following complications from RSV.
Skylar, who lived with quadriplegic cerebral palsy and Crohn’s disease, died on Sunday, July 19 after contracting RSV, which developed into pneumonia.
“I just feel numb, to be honest,” Myrwoda told Pulse.
“Her birthday’s next month, so instead of planning her birthday, I’m planning her funeral now.”
Myrwoda said her daughter was “very happy and very cheeky” despite everything she endured.
“She always smiled and laughed even when she was in tremendous pain,” she said.
“She was just a happy little girl for everything that she went through.”
Skylar had developed scoliosis in recent years that was severely affecting her quality of life.
Surgery was not an option because the lengthy operation was too risky, so the family joined palliative care and focused on keeping her comfortable.
Skylar was the youngest of five children. Her siblings, aged 16 to 23, are struggling with the loss.
“They’re quite broken,” Myrwoda said.
“Skylar was kind of like our rock in our family.”
As the family prepares for Skylar’s funeral, they are also facing the financial pressure of arranging a service.
A follower of Skylar’s Facebook page, which documented her journey over the years, set up a GoFundMe to help cover funeral costs.
It has raised $7,000 so far, but the family was quoted around $17,000 for the funeral service.
Myrwoda said the funeral home had been supportive, waiving a $1,000 deposit and offering some services for free to bring the cost down.
She said she had considered selling her car and other belongings to cover the gap.
“In the whole of Skylar’s life I’ve never asked for help,” Myrwoda said.
“This was kind of like really big for me to ask for help.”
“I’ve never lost a child before, so I’m just like numb, like I can’t do anything.”
To donate, visit the GoFundMe.
