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We kept saying to ourselves, "Why is our sweet little Carys being burdened with this awful genetic disease?"
Ellen is a bright, bubbly 23-year-old with a heart of gold. Ellen also has NF2, a rare genetic disorder affecting 1 in 25,000-40,000 people.
Libby is a Harry Potter loving, NF2 hero, who dreams of being a veterinarian when she grows up. Libby also has Neurofibromatosis Type 2.
"We had never heard of Neurofibromatosis and we were completely numb listening to the suspected diagnosis."
Being told I would need surgery was a huge shock following six years of stability. It was a realisation of the volatility of this disorder.
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ABN 26 1488 155 34
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