Morgan's story – adrenocortical carcinoma

Parents Natalie and Matt are Standing Up To Cancer in memory of their son Morgan, who died in June 2023, just before his fourth birthday.

Natalie said: “From the second he was born, Morgan was a very laid-back baby, he was happy.

“Around two years later, just after I had my daughter Rhiannon, we started noticing symptoms in him.”

Morgan had put on weight and started complaining about pains in his tummy.

He was diagnosed with a rare cancer called adrenocortical carcinoma.

Natalie said: “Your heart breaks on that day and then it breaks in a million little ways every day in the days that follow.”

Morgan’s treatment included multiple surgeries and immunotherapy. He did go into remission, but a few months later, Natalie and Matt spotted some swelling around his tummy.

“They said that it just wasn’t working whatever we were doing, it was coming back.”

Morgan tested positive for Li-Fraumeni Syndrome, a condition caused by a mutation of the TP53 gene that dramatically increases the likelihood of cancer.

As a result, the wider family were also tested and the same mutation was found in Matt and Rhiannon.

Matt said: “If it wasn’t for Morgan, Rhiannon and I wouldn’t have been tested; we wouldn’t have that diagnosis.

“We are now able to think about preventative measures we can take for Rhiannon - Morgan losing his life has probably saved mine and certainly his sister’s.”

Natalie said; “Knowing Rhiannon is being looked at regularly gives her the best chance.”

Matt and Natalie have dedicated themselves to supporting other families facing cancer and funding vital research to improve treatments and outcomes.