2012 Lancefield Motorcycle Run 1000
'Amber & Kaya Muscle Run'
Sunday 19 February 2012

Amber. 8 years old.
When you first meet Amber or when you see her sitting & playing with her friends, talking & laughing she appears just like any other normal happy 8yo except for one thing.Amber suffers from a very rare neurological condition known as Charcot Marie Tooth disease (CMT).

Amber was diagnosed with a severe form of CMT known as Dejerine Stottas. It is even rarer still as Amber’s DNA is different to what is typical of this disease. CMT is a neurological disorder that causes damage to the peripheral nerves, which carries the signals from the brain to the spinal cord & the muscles.

Since she was 3yo Amber has endured surgery to her hips, back and ankles. Amber now requires more major surgery before the end of the year to have a growth rod placed in her back to prevent further curvature of her spine.

She requires hours of physiotherapy, cannot stand or walk independently without the aid of a walker or her wheel chair.If all that was not enough, she has recently experienced the tragedy of losing a close family member to cancer.

Amber is a sociable young girl with a great circle of friends & loves going to school. Amber is a very bright little girl who has a full life & just wants to be the same as everyone else.

For more detailed information on Charcot Marie Tooth disease refer to website www.cmt.org.au or see the Amber & Kaya Info flyer on the Flyers link above

Kaya. 8 years old.
Kaya is like any other 8yo old boy who likes to play with his friends & imitate his favourite superheroes, he is a massive Spiderman fan & rarely do you see him without a smile.

However there is a harsh reality that Kaya does have to deal with that most other young boys would never imagine facing, at the age of five he was diagnosed with an extremely powerful, debilitating & incurable neuromuscular disorder,Duchenne Muscular Dystrophy(DMD).

Kaya will experience the followings stages as DMD gradually weakens his muscles. Loss of strength & mobility causing wheel chair dependency; Scoliosis, requiring spinal curvature surgery; Heart & Respiratory function will decline causing fatigue & his immune system will deteriorate making him more susceptible to infections.

Kaya is surrounded by his loving & supportive parents, 3yo brother & extended family. Kaya’s family must live with the knowledge that very few boys affected with DMD live past their twenties & are unable to take away the pain that he is experiencing & will continue to go through.

For more detailed information on Duchenne Muscular Dystrophy refer to website www.mda.org.au or see the Amber & Kaya Info flyer on the Flyers link above