Girl with Dejerine-Sottas receives Children of Courage award

From the Macedon Ranges Leader, by Barry Kennedy:

Amber Jepsen
Amber Jepsen was one of 10 children to receive a Lions Club Children of Courage award

CARLSRUHE’S Amber Jepsen has a growing set of hobbies including horse riding, playing the keyboard, card games, drawing, painting and writing.

The seven-year-old is confident she will be a famous author and knows the full dimensions of her parent’s farm because she loves taking her dog for a walk in her electric wheelchair.

Amber’s many passions come despite some crippling setbacks caused by Charcot Marie Tooth disease of which she has an even rarer strand, Dejerine Sottas.

The neurological disorder affects signals from the brain to the spine and muscles making joints and muscles loose and fragile.

The disorder has prompted a range of physical impairments and health scares with hip and ankle surgery as well as having her spine stapled.

Amber’s mother Shelley said her daughter has no concept she even has a problem.

“She has lots of friends at Newham Primary School and at home she just hangs off everything as she criss-crosses the house,” she said.

Mrs Jepsen said the family knew the Royal Children’s Hospital too well especially as her health issues spanned many specialists.

Amber’s plucky attitude was last month honoured in the Lions Club Children of Courage award under the special needs category for children who have endured lengthy periods in hospital or with pain and trauma.

Chairperson of the awards Julie Starec said all of the nominees, aged between five and 15 had attempted to overcome their obstacles and improve the quality of their lives.

Ten children were nominated this year for the region incorporating the Macedon Ranges, Melton, Sunbury and Castlemaine including Ingrid Gersbeck from Clarkefield, 8 and Shae Benfell, 5, from Riddells Creek.

Sunburys Sophie Geytenbeek,12, also received an award for her strength suffering congenital heart disease. Molly Clohessy, 9, was awarded for her resilience in treatment for Dravet Syndrome. Patty Carlyon, 13, was awarded for an inspirational battle with leukaemia and Bulla’s Nathan Smith, 14, was awarded for his achievement over coming asthma to compete at a national level in swimming.

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