Millions of Americans struggle to get adequate health care, including people with insurance. This is especially true for one Syracuse family. Since their daughter with cancer got sick, they’ve fought to get coverage for her treatment. 

“Frustrating isn’t even the word,” said mother Ashley Papworth. “It’s not like the movies at all.”


What You Need To Know

  • The Papworth's daughter Laila, was diagnosed with Rhabdomyosarcoma, a rare form of cancer, in 2018
  • Health insurance has been their biggest obstacle to getting her treatment
  • For clincal trials and other forms of treatment, they want to go out of state, but insurance won't cover that. The family has a GoFundMe 

When you look at the Papworth family, it’s clear they stand together. Their shaven heads show solidarity for Laila, their 12-year-old daughter with Rhabdomyosarcoma, a rare form of cancer. 

Laila was diagnosed in 2018 after a month of ear aches and sinus pain. From the onset of her symptoms, the Papworth's have had a fight, and fight hard to get medical care for Laila.

“Whatever is out there and available to any doctor or any facility should be available to my daughter and to me,” said Papworth.

They have state insurance through Medicaid and despite road blocks, Laila was able to get treatment and finished chemotherapy in June. But soon after, her symptoms came back. 

“It sucks to have to go through it again. It’s almost worst than the first time,” said Papworth.

The Papworth's said there are no words to describe watching their daughter suffer, but when they have to wait for clearance from insurance or are denied coverage, it can be almost as difficult, especially when time is critical for Laila. 

“When there are options or plans you come with and you’re get met with ‘no, you can't do that,’ that is where I lose my mind and I start to go insane,” said Papworth.

Due to the rarity of Laila's cancer, there is less knowledge about treatment plans. Much of her care is considered experimental, forcing Laila’s doctors and parents to find what little research exists in order to convince insurance for coverage.

“Being handcuffed as far as treatment or funding goes,” said father Taylor Papworth. “I mean that lit a fire under you that’s why we are where we are. Using a metaphor, you want to light the world on fire you don’t want to let that stand.”

The Papworth's have learned about clinical trials or different treatments for patients with Rhabdomyosarcoma, but most are out of state and won’ be covered. In spite of that they remain positive.  This week they were finally approved, after two appeals, for immunotherapy treatment for Laila. 

”Now I feel hope and you have to have that,” said Papworth.