A devastated family in England is turning their grief into action after their 4-year-old son,

Jaxon Knowles, died suddenly from a rare and aggressive form of meningitis.

His parents, Sammy and John Knowles

, are speaking out in hopes o

f raising awareness about the deadly disease and funding more research to prevent future tragedies.

John and Sammy Knowles with their son Jaxon,

Photo Credit: Sammy Knowles/Facebook

Jaxon, described as the couple’s “miracle baby,”

was born in July 2020 after his parents endured years of infertility struggles.

Sammy and John had spent seven years trying to conceive

, undergoing five rounds of IVF and suffering three miscarriages before finally welcoming their son into the world.

The rash looked like burst veins, and then he started throwing up,” she said.

“His mouth swelled up, and I knew something was horribly wrong.”

Panicked, the parents called emergency services, who instructed them to lay

Jaxon on the floor and count his breaths

. When paramedics arrived, they were rushed to Rotherham Hospital

, where they learned that 15 doctors and nurses were waiting for them in the ICU.