How Stem Cell Therapy Could Save Our Brave Boy!

Six-year-old Ethan is in the fight for his life as one of 2000 people in the world with an incurable disease

A manda Fenn knew something was wrong when her 10-month-old son Ethan couldn’t situp by himself.

His three older siblings had all been walking by that stage, and Amanda was worried about why he was struggling.

At 11 months, Ethan looked thin – almost ‘fragile’ as Amanda put it – so she took him to see a doctor.

“They sent us to a paediatrician who just said, ‘Each kid develops at their own rate, it’s nothing to worry about, he’ll get there’,” recalls Amanda.

“But being a mum-of-three already I thought, ‘No, something’s not right’. So we decided to get another opinion.”

With his parents Amanda and Chris and his siblings.

Despite being brushed aside by a second paediatrician, Amanda knew something was wrong and kept pushing for answers until Ethan was finally admitted to hospital.

A series of blood tests and urine samples revealed a potential problem with his kidneys, but when the diagnosis finally arrived that Ethan had cystinosis, a lack of explanation from the medical staff left Amanda in the dark about what it all meant – until she started doing some research of her own.

SCARY NEW REALITY

“We had to wait two hours [at the hospital] for the script to be made [for Ethan’s medicine] so I Googled it... and that’s when our world fell apart,” says Amanda. “The first thing I saw was, ‘Rare incurable genetic disease. Life expectancy, eight years old.’ I rang my husband at work and he broke down.

“I just held Ethan and said, ‘We’ll get through it together.’”