Savannah’s story

Ehlers Danlos Syndrome (EDS) is a genetic connective tissue disorder. This means the collagen in Savannah’s body is defective.

The body relies on collagen to give its connective tissues strength and to hold itself together.

Intensive physio is used to try to prevent further damage and to build strength of muscles and joints, there is no cure for EDS.

The family travel up to Brisbane every month to see specialists or to collect equipment that Savannah needs. Sometimes they are up several times a week depending on how Savannah is coping or if her sisters also have appointments.

As a result of her EDS, Savannah has severe gastric problems and has required many gastric procedures and surgeries, she has been tube fed either via a Naso gastric tube or a gastrostomy button since she was 14 months old.

Savannah has also needed major orthopaedic bone surgery on her hips in the last two years to repair the turning of her legs caused by her loose joints. She also needs regular checks of her heart and other organs to
ensure that they are working correctly.

Due to all the trauma that Savannah has gone through with the many procedures that she has required, and the pain these have caused, Savannah now has severe PTSD and anxiety.

Mum, Belinda explains how the Children’s Hospital Foundation have helped. “When Savannah is in hospital, she knows the volunteers in their green shirts are not there to do anything that hurts, they are there to play and have fun, which means that I can go grab a coffee and some fresh air or have a hot shower without leaving Savannah alone.”

Story written and details correct June 2019