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

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.

“We had almost given up,” Jaxon’s mother told in an interview. “Every moment with him was a blessing, and we always tried to make his life as special as possible.”