Mi Life Is An Adventure

Mi crazy, wonderful, beautiful life.

1 in 50,000 August 7, 2011

This football stadium holds 50,000 people. Only one person in the crowd will have MHO.

Those are the odds that someone will be born with the genetic disorder Multiple Hereditary Osteochondromatosis or MHO for short.

MHO is caused by abnormalities in the EXT 1 and EXT 2 genes, resulting in benign tumours that grow on the long bones of children and teenagers, resulting in disfigurement and pain.

I just found out that my daughter has it.

Oh yeah, and as an adult, those benign tumours can actually turn into cancer.

I refuse to cry, I am trying really, really hard to not be pissed off, and I am trying to focus on the here and now. There is no room in my life for a pity party.

But right now, at 2 am on Saturday night, I am feeling alone, scared, angry, sad, and definitely not hopeful.

What does this mean for my beautiful daughter? She already has a wonky shoulder, we can see and feel the tumours on her knees and ribs. How are her peers going to treat her as they become more noticeable?  Are adults going to stare at her? Will people laugh and tease her? Will she come home from school in tears?

How do I prepare myself for the inevitable, especially when there isn’t much help, or hope out there?

I refuse to cry.

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