Tag Archive: neurofibromatosis

The Long and Winding Road

A Guest Post by Natalie: When our youngest daughter, Mandy, was diagnosed with Neurofibromatosis Type 1, I was completely blindsided. I had never heard of this absurdly long word with too many vowels. I promptly came home and obsessively played Dr Google, looking for anything I could find to help me understand what must surely…

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Compassion

Written by Natalie Let’s be honest, the journey through the more complicated side of neurofibromatosis with our daughter Mandy has not been easy. There have been many days of uncertainty, of fear, of desperation, of anger. We have tried to find the blessings whenever we can. One of those blessings is being able to see…

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The Diagnosis

Written by Natalie: Every parent to a special needs child has that story. You know the one, the one we never wanted to have. The diagnosis story. As an introduction, I thought I would share ours. It was the first of many diagnosis stories to follow. So, how was my daughter Mandy diagnosed? The answer…

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